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CMS Final Rule on Emergency Preparedness: What Health Centers Need to Know

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CMS Final Rule on Emergency Preparedness: What Health Centers Need to Know

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Developing Informatics Tools and Strategies for Consumer-centered Health Communication

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Developing Informatics Tools and Strategies for Consumer-centered Health Communication

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Abstract

As the emphasis on individuals' active partnership in health care grows, so does the public's need for effective, comprehensible consumer health resources. Consumer health informatics has the potential to provide frameworks and strategies for designing effective health communication tools that empower users and improve their health decisions. This article presents an overview of the consumer health informatics field, discusses promising approaches to supporting health communication, and identifies challenges plus direction for future research and development. The authors' recommendations emphasize the need for drawing upon communication and social science theories of information behavior, reaching out to consumers via a range of traditional and novel formats, gaining better understanding of the public's health information needs, and developing informatics solutions for tailoring resources to users' needs and competencies. This article was written as a scholarly outreach and leadership project by members of the American Medical Informatics Association's Consumer Health Informatics Working Group.

Introduction

Consumer health information resources provide health information to lay users, hopefully to empower patients, caregivers, families, and consumers; improve decisions; and ultimately foster better public health outcomes. Although the number of consumer-oriented resources keeps growing, their effective use requires significant lay knowledge and skills in areas ranging from health terminology knowledge to effective use of electronic media. Competency deficiencies among those who most require such capabilities result in a digital divide, or a growing gap between persons who can and cannot benefit from the proliferation of online health information. The field of consumer health informatics has the potential to assist developers with tailoring resources to consumers, which reduces gaps between the knowledge and skills required by the resource and possessed by its users. The goals of this article are: (1) to review existing theory and informatics tools in the field of consumer E-health communication, and (2) to identify existing challenges and make recommendations for further research agenda. The approaches discussed in this article include, but are not limited to: work on the development of consumer health vocabularies, implementation of tools for information retrieval and readability support, integration of user needs and usability concerns into the design of consumer health information resources, and assessment of users' health literacy as well as the quality of information resources. Although health information can be delivered to consumers via a variety of media types (e.g., audio and video programs, podcasts, CD-ROMs), the usage of "consumer health informatics" throughout this article primarily refers to the provision of health information resources to consumers via the Internet.

The article is divided into four sections. Section one discusses the theory and trends in digital health communication. It includes an introduction to the conceptual dimensions that influence informatics health intervention and outlines a variety of consumer E-health applications in public health, the health care delivery system, and patient care. Section two reviews barriers to designing effective resources for communicating with health consumers. These barriers include issues of access and user competencies, as well as designers' limited insight into users' information needs. Section three reviews selected informatics research on tools and strategies to overcome health communication barriers, including developing improved consumer health vocabularies, optimizing information retrieval and readability, evaluating information quality, incorporating user needs plus usability concerns into systems' design, and assessing users' health literacy. Section four, which is the conclusion, provides broader challenge and recommendations for future research.

This article originated from a round-table discussion during the 2007 AMIA Spring congress, when over 30 attendees with an interest in consumer health informatics expressed their views on the current state and research priorities of the field. The transcript of the discussion was instrumental in defining the topics covered in this manuscript. The manuscript was then reviewed and adopted by AMIA's Consumer Health Informatics Working Group, and endorsed by the AMIA Working Group Steering Committee on January 28, 2008. This article is intended to raise intraprofessional awareness, outline research priorities, and advance scholarly outreach and leadership. It does not provide a comprehensive literature review.

Theory and Trends

Conceptual Dimensions of Consumer Health Informatics

Although mass media-based public health campaigns have been common within the United States for almost 3 centuries, 1 it was not until the 1970s that health campaigns developed a formal literature. 2 In a discussion of consumer health informatics' formative direction, Napoli 3 suggested its disciplinary advancement could be accelerated by integrating the conceptual frameworks derived from the 30+ year legacy of health campaign research.

Logan and Tse4 recently combined the conceptual history of health campaign and information-seeking process (ISP) research into an integrated conceptual framework of consumer health informatics and health communication to the public. This conceptual framework attempts to bridge the conceptual gaps between health campaign, health communication, and consumer health informatics research. The conceptual framework integrates the ISP, which is a dynamic, iterative series of cognitive processes, with four additional dimensions advanced by the health campaign research literature.

Within this broader environment, the second dimension includes a consumer's environmental and affective context (e.g., emotions, feelings, instincts, broad non-information seeking interests, and motivations); the possibility of multidimensional, situation-based responses; and the probability that health information seeking and media use reflect both cognitive "uses" (such as information gain) as well as emotional "gratifications." 6, 7 The third dimension includes: (1) assessing a consumer's immediate social influences, social milieu, and behavioral adaptability, such as the influences of peer pressure, community influences, and commercial advertising on health information seeking and behaviors 8-10; (2) a more sophisticated understanding of individual cognitive behavioral factors, such as a person's problem solving and decision-making skills, 8, 9, 11 and (3) the degree a consumer's commitment to a specific health behavior is matched by other relevant skills or abilities to successfully adapt a health or medical intervention, including health status. 9, 12 All three dimensions reflect an important research-derived understanding that a consumer's affective response, setting, lifestyle, and skills are as integral as cognitions (e.g., prior knowledge and information seeking habits) and health status to conceptually frame the dynamics of how persons seek health information. 2, 7

A fourth dimension emphasizes macro forces, such as a nation's or region's health resources, its global or national context (e.g., developing versus industrialized, cultural, and religious heritage) its economic prosperity and geopolitical factors.13

The linking of traditions in information science and health campaign research provides: (1) an integrated multidimensional conceptual framework, and (2) a convenient launching point for multidisciplinary efforts to better assess, explain, and model consumer motivations to seek, retain, and relish health information resources on the Internet. The integrated framework strongly suggests that a consumer's information-seeking process is impacted by affective, community, sociological, demographic, and individual skills, macro and micro cultural realities, as well as the possibility that the purpose of seeking health information and using health resources on the Internet is not always to gain information. 6, 14 The integrated framework also suggests that the process of health communication is horizontal and multidirectional. Many of the conceptual dimensions and issues outlined here are discussed throughout the article.

New Trends in Health Communication and the Emergence of E-Health

Health communication via electronic media has roots in more traditional media. Books, encyclopedias, and take-home patient brochures were among the first available mass media to share health information. Mass-printed media, such as newspapers and magazines, and television also have been used to deliver information. However, the power and popularity of the Internet significantly increased the types of available media resources, changed the mechanics and economics of the mass delivery of health information, the potential for increased consumer access to health information, and the modalities by which persons seek health information.

Three groups participate actively in the E-health information exchange: health care providers (clinical and other), patients and their immediate caregivers, and others, including healthy persons who wish to stay well. The Internet has provided numerous opportunities for health care professionals to interact with their patients and with each other. For example, telemedicine has made it possible to diagnose from a geographically different place and time, e-mail is used to provide advice, and pharmacies encourage electronic request for refilling of medication. Health care professionals also can consult each other using listservs or in online communities of practice. In a study of an advanced practice nurses' listserv, Hara and Hew15 found the majority of activity (more than 80%) consisted of knowledge sharing or information solicitation. Finally, health care professionals together with hospitals, insurance companies, nonprofit and for-profit health care organizations/institutions and the news media, provide health information via websites, electronic newsletters, or e-mail.

Barriers to Effective Consumer E-Health Communication

Access, Competencies, and Digital Divide Issues

The opportunities afforded by E-health are not equitably available to everyone. Because E-health's inception, researchers, policy makers, and consumer health information product developers have been concerned about outreach to medically underserved audiences and the link between health disparities and Internet access. Ratzan and Parker21 find those who most need health information lack the means, knowledge, and skills necessary to benefit from Internet health resources.

One significant barrier to the use of Internet health resources is consumer access. Pew Internet and American Life Project found in 2006 that 27% of U.S. adults had no online presence, and most Americans used a slow-speed connection. 19 Nonusers were more likely to be poor, less educated, over the age of 65, disabled, members of ethnic minorities, and nonnative English speakers. 20

Although the access gap may be narrowing, health literacy has emerged as a more fundamental barrier to providing Internet and other health resources to medically underserved and other audiences. 21 Health literacy also is now perceived as a primary obstacle to reducing health disparities. 21 Health literacy is "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." 21 It is useful to think of health literacy in terms of the core competencies required to retrieve and process various kinds of consumer heath information online. A number of conceptual models and frameworks identify somewhat different but largely overlapping sets of instrumental skills. 22, 23 These include general literacy skills (reading ability, oral and written communication), numeracy skills (estimation, computation, understanding probabilities), conceptual knowledge, health vocabulary knowledge, document literacy (understanding format and function of specific health-related forms), technological fluency (ability to manage information technology devices), and information seeking skills and rhetorical skills (advocacy, making requests and complaints). An individual's propensity to exercise health literacy skills is related to perceived cognitive abilities, health/physiological status, mass media familiarity, perceived self-efficacy, as well as social and cultural norms (similar to the conceptual overview discussed in the first section).

Further, about 50% of U.S. adults do not possess adequate health literacy skills required for many health communication and management tasks. 24, 25 Similar to Internet access, health literacy skills are disproportionately low among economically disadvantaged people, seniors, and ethnic minorities 26, 27 Problems with understanding health information can often be related to inadequate general literacy skills. For example, 43% of U.S. adults have difficulty with moderately challenging prose literacy activities, such as drawing on two separate statements in a text to make an inference. 28 To address this problem, many guidelines recommend writing consumer health materials at the 6 th to 8 th grade level, as measured by existing general readability formulas. Actual readability of material varies, but most assessments report that at least 50% (typically, more) of the reviewed materials were written above the 8th grade level. 29 In addition, health understanding also can be difficult even for persons with higher-than-average English or other language proficiencies. The Institute of Medicine found that above-average language skills are not necessarily associated with the public's functional understanding of health messages, or medical information. 21 The Institute of Medicine added that health education and literacy are not necessarily addressed by the same strategies used to bolster general education and language skills. Hence, improving health literacy is more challenging than general literacy and successful public communication strategies are not necessarily predicted by audience demographics or educational backgrounds.

Much research attention has been given to consumers' limited understanding of probabilities and difficulty reasoning about risk. Studies suggest that individuals across all education levels have difficulty interpreting probabilities, understanding the equivalence between percentages and proportions, converting the data from one representation into another (e.g., 1 in 500 to 0.002) and taking baseline risks into account. 30 These difficulties, from which even health professionals are not exempt, are likely to complicate reasoning through many important decisions (e.g., selecting a treatment option). Computational skills present another quantitative barrier to interpreting health information: 55% of U.S. adults have below basic or basic quantitative literacy level, and can only deal with simple numerical operations. 28

Recent evidence suggests that inadequate health literacy negatively impacts health behaviors (e.g., medication adherence and compliance with physician instructions) and broader clinical outcomes. 27, 31 Although the field of consumer health informatics cannot remedy all the challenges raised by health literacy, it can reduce the gap between user health literacy and consumer E-health resource health literacy requirement. This can be accomplished by providing ways to assess or estimate users' health literacy and appropriately tailor the presentation of health information.

Limited Understanding of the Public's Health Information Needs

Paradoxically, there is voluminous literature on the information needs of health care professionals but very little on those of patients and little about the needs of the general public. In practice, systems design is typically guided by the providers' perception of patients' information needs, rather than by actual needs assessment.32

Our conceptualization of health decision making as a social process (that includes consumer convergence and the uses and gratifications derived from health information) leads us to believe that information needs of caregivers, family members, and peer groups should be given greater research attention. The contribution of ethnicity to information needs also deserves more study, as group differences have been found in information preferences. 37 Research that contextualizes needs within disease and treatment stages also suggests how information needs of patients change with time. For example, Echlin and Rees 38 argue for an understanding of a continuum of treatment in relation to information needs, not just what is needed but when it is needed for the particular population studied, encompassing pretreatment, in process, and posttreatment.

Research about the information needs of clinicians and patients/consumers typically has been performed with little attention to their similarities and differences. Timmins and Kaliszer 39 are among the few researchers who examine differences between patient and practitioner perceptions of information needs. These investigators found significant differences between rankings of postmyocardial infarction patients' information needs and nurses' perception of those same patients' information needs. From 37 information items categorized in seven types, nurses and patients were found to agree on only a few highly ranked information items including, "what to do when in chest pain," "what are the symptoms of a heart attack," and "what to do to reduce the chance of another heart attack." However, items such as "when to resume driving," "when to resume sexual activity," and "when to resume work" were rated by nurses as very important but by the patients as unimportant. To empower health consumers, information content and presentation should be dictated by consumer agendas and information needs. Before health informatics researchers can meet these needs, we need to understand lay audiences more thoroughly. One potentially promising way of gaining an insight into lay health information needs without direct questioning is by analyzing the popularity of various health information websites (assuming that popularity correlates with relevance). 40

Five Other Consumer E-Health Communication Barriers

Besides the systematic obstacles outlined above, there are at least five other operant barriers in consumer health informatics research that seeks to optimize how health information resources are provided to the public, patients, and providers. First, although informatics has demonstrated potential to improve health communication to the public, the field faces challenges similar to those faced by health communication researchers, such as a need to serve diverse demographic and psychographic audiences within a variety of communication contexts. Because health care consumers are a heterogeneous group with varied cultural, educational, and social backgrounds (who engage in horizontal, multidirectional health communication within an array of contexts), the resulting diversity makes it difficult to develop general informatics solutions.

Also, although groups of clinicians and scientists using a professional resource typically share similar education backgrounds and often handle similar tasks (e.g., a literature search on a well-defined topic), for patients and caregivers, there is little training and predictability in information-seeking patterns. Although a consumer health website can use a built-in health literacy assessment tool to match the user to a desired readability level, optimal information presentation sometimes depends on the English fluency of the recipients, other health literacy competencies (such as a user's health information seeking proclivities), as well as a host of interactive factors that include user motivation, prior knowledge of the specific topic, and the context (e.g., the diagnosis, emotional state). Overall, the multidimensional nature of a consumer or an audience's converging on health information resources, which was outlined in the article's first subsection, poses a significant challenge in developing tailored consumer E-health resources on the Internet.

The complexity of communicated information presents a second challenge. For example, many consumer-generated, straightforward health questions, such as "Does hormone replacement therapy cause cancer," lack a simple answer. To comprehensively respond, one might discuss increased and decreased risks for different types of cancers, absolute versus relative risks, personal versus population-level risk prediction, and different types of hormone replacement therapies. In other words, adding a context to increase understanding can be detrimental to its comprehension by some health information consumers.

Third, some routine lay communication scenarios, such as informed consent, present externally imposed barriers that challenge researchers, providers, patients, caregivers and communicators who seek to make health information understandable. Informed consent forms serve a dual purpose: although the primary purpose is to help potential participants in clinical trials to make informed decisions, the secondary one is to limit liability. Yet, it is difficult to simultaneously simplify content and provide an effective legal defense. In this common example, the best of intentions to make language understandable may be eclipsed by external requirements, which can divert attention from a user focus, or result in more attention to the format in which information is presented instead of its content. While content might follow function in informed consent, the overriding issue in health communication creates scenarios where a range of optimal communication options may be unavailable.

Fourth, because communication is a horizontal, multidirectional process, the complexity of the information provided by consumers certainly must be taken into consideration. Patients' accounts of their health history may involve intricate narrations, concerns, and reasoning patterns. Whereas historically such information was often not well documented, the new emphasis on shared record keeping increases a need to devise accurate and efficient ways to represent and integrate patient-generated information.

Fifth, besides providing understandable information, measuring the clinical and cost-effective impact of health communication may be problematic in consumer health informatics research. In traditional mass media-based health campaigns, information is typically provided to either promote or discourage a behavior. Such behavior changes (e.g., smoking cessation) can then be measured as the outcome of the campaigns. However, consumer health informatics applications, such as information retrieval and decision support tools, often do not directly target immediate, measurable behavioral changes. Although consumer informatics researchers assume that well-informed patients make better self-care decisions and in the long run have better health, the inability to focus on a specific behavior undermines the demonstration of a specific, therapeutic, health-related outcome. While a higher level of patient satisfaction (e.g., a patient feels more confident about the decision to undergo a procedure) represents a positive outcome, informaticians should think about improving the accountability and outcome measures in consumer health informatics initiatives.

Although all five aforementioned challenges are common in consumer health informatics research, the point is for researchers to remain mindful of them in study design and execution. The ability to address each challenge is an opportunity to advance how informatics provides health information to intended audiences and advances communication among them.

Informatics Tools and Strategies to Eliminate Health Communication Barriers

Developing Consumer Health Vocabularies

As previously mentioned, a significant element of the multidirectional E-health communication between consumers and providers is text-based, and vocabulary is an essential component of all textual messages. Education materials, medication labels, informed consent forms, personal health records, patient e-mails, news group postings, and Web queries all require adequate vocabulary knowledge for both machine processing and human understanding. This raises two issues: first, many consumers have difficulty comprehending medical jargon. Second, computer systems may not recognize lay health terms if they are not included in a controlled vocabulary such as Unified Medical Language System (UMLS).

Health communication researchers have partially explored the lay-professional vocabulary barrier. More health education for consumers and increased communication education for providers are two potential solutions, but both will take decades and a massive investment in adult, child, adolescent, and professional education to accomplish. In the interim, the authors believe informatics can and should provide much-needed assistance (although it will not provide a total solution) to both health consumers and providers.

To address the critical need of vocabulary support for consumer health application, both for-profit and nonprofit organizations have developed consumer health vocabulary (CHV) products. Three commercial entities (Intelligent Medical Objects, Apelon, and WebMD) created CHV and/or CHV tools between the late 1990s and early 2000s. The content of the Intelligent Medical Objects and WebMD products are proprietary. Apelon's product has been proprietary, although it might move to open source in the near future.

There are two early CHV-related developments in nonprofit settings: the Planetree Classification System ( www.planetree.org) and women's health thesauri, for example, those developed by the former Boston Women's Collective ( www.ourbodiesourselves.org) and the Canadian Women's Health Network ( http://www.cwhn.ca). These are lay-friendly categorization schemes for health content, although not extensive representations of lay vocabularies. The Planetree system has been used by a number of consumer health libraries and on-line sites. 41, 42 The Canadian Women's Health Network's health information center uses the Canadian Women's Health Network thesaurus, consisting of more than 4,000 keywords, to catalog its online topic pages. Since the early 2000s, a number of informatics researchers have analyzed consumer-authored texts and found discrepancies between the health terms and concepts used by consumers and professionals. 43-48 Based on these studies, a Consumer Health Vocabulary Initiative ( www.consumerhealthvocab.org) was formed and an Open Access Collaborative (OAC) CHV has been developed. 49 There is a plan to submit OAC CHV to the National Library of Medicine in 2008 for incorporation into the UMLS. Overall, the CHV research and development has taken an audience-inspired and data-driven approach and has the potential to provide valuable tools for addressing the lay-professional language barrier in consumer E-health applications.

Optimizing Information Retrieval and Text Readability

Health domain-specific portals are available and popular. For instance, MedlinePlus.gov and WebMD received top rankings by Alexa Web Information Company based on visits in the health category (October 2007, www.alexa.com). Consumers reading this type of information are influenced by it, so misunderstandings may lead to poor decisions. Hence, it is important to facilitate the retrieval and understanding of accurate, precise, patient-specific, and actionable information.

Despite this evident need, improving information retrieval with consumer-friendly tools remains surprisingly uncommon and is limited to a few research projects, such as term suggestion tools to enhance the retrieval of appropriate information. The good news is that some term suggestion tools report significantly increased success rates in helping consumers find relevant documents. 49 Yet, once the information is found, consumers still need help evaluating the validity of the information they find, especially for unknown and new sources. More research and development are needed in this area, as discussed in the subsection below. Then, to facilitate consumer understanding of retrieved information, all text and graphics need to be presented so they are understandable to lay audiences. Several groups have developed guidelines for writing text for the public, e.g., the National Institutes of Health Plain Language Initiative or the California Health Literacy initiative. These guidelines usually suggest using readability formulas, which assign grade levels to English text; some advocate a maximum as low as 6th grade level. A vocabulary-based evaluation can compliment such formula-based evaluations. 50 However, this approach is not ideal for three reasons. First, it is impractical to rewrite all existing online information. Second, it is impossible to enforce adherence to the guidelines for new text, and third, not all biomedical topics can be explained at a very low grade level and provide actionable knowledge for readers.

Increased understanding can be accomplished by enhancing text readability; by facilitating precise information retrieval with optimized, domain-specific search engines; with query assistance; with information validation; and with optimal results presentation. Potential solutions such as automated translation to easier text, visualization, and animation require additional research. Yet, readability challenges and the optimal format for information presentation (such as the utility of accompanying graphics) remain underexplored areas.

Evaluating and Ensuring Information Quality

The evaluation of the quality of online health information has been a concern since the Internet became widely available to consumers. The medical literature began to address the problem in 1997, following Impiccatore et al.'s disturbing findings on uneven official recommendations for pediatric fevers.55

The 1997 Mitretek report 56 outlines seven core criteria of quality: credibility, content, disclosure, links, design, interactivity, and caveats. The (2007) MedlinePlus Guide to Healthy Web Surfing ( www.nlm.nih.gov/medlineplus/healthywebsurfing.html) makes similar suggestions. It encourages users to:

Use "recognized authorities" (about us page, contact information)

Focus on quality (editorial board members, credentials of members, posted selection policies)

Be a cyberskeptic (sensitivity to potential quackery demonstrated by unreasonable health claims, obscure language, miraculous results, etc.)

Look for the evidence (author identification, author credentials, contact information)

Check for currency (dates on documents, current links, update information)

Beware of bias (site sponsorship, clear identification of source of content)

Protect their privacy (posted privacy policy)

A complete listing of quality criteria found in various instruments can be found in Jadad and Gagliardi. 57 "Indirect" indicators, such as "impact factor" derived from Medline citations to cited authors, as a proxy for "credentials" also have been explored. 58

As health information quality received more attention, policy statements and codes multiplied. Similar to MedlinePlus's aforementioned guidelines, others have incorporated quality criteria and packaged them for easy consumer application. For example, the Health on the Net Foundation ( www.hon.ch), a nongovernmental organization that began after an international conference in Switzerland in 1995, provides consumer-friendly quality guidelines. The DISCERN tool, an outcome of the DISCERN On the Internet Project funded by the British National Health Service, ( www.discern.org.uk/index.php) is designed to be used online, and features 15 questions that generate a rating of quality, based on the assessment of reliability, trust, and specific details about the information presented.

Because Healthfinder.gov currently lists many of these instruments as recommended evaluation tools for the consumer, a renewed effort to provide grounded guidelines for consumers to determine quality health information is a research priority. Innovative approaches to quality assessment would also be beneficial. For example, the work of Dutta-Bergman 62 calls for a segmented approach to consumers, an approach that appreciates the demographic differences between respondents who trust a particular online source and those who do not. Mechanic 63 calls for physicians to "sharpen their own communication skills" and work on strategies for new kinds of partnerships with consumers; he cites innovations like "training in communication skills; creative uses of the Internet and videotape technologies; improved 'customer service' programs; critical pathways for patients; and special educational aids." In addition, community expertise, as opposed to individual expertise, is assuming more dominance in the conversation. For example, Eysenbach 64 postulates that in the age of Web 2.0, the opinion of influential peers/leaders in online communities becomes the key conveyor of source credibility. This points to the potential of community/user feedback as a contributor to a quality metric (although of course the ability to distinguish between quality and popularity is essential). The role of the health care provider as evaluator and gatekeeper of these metrics as well as the information they assess cannot be underestimated here; Cullen 65 found that the medical specialist assumes an important role not only in the dissemination but also in the establishment of information quality, and not only for consumers but also for generalist practitioners. Finally, it is important to address the distinction between information completeness, accuracy, and quality. Although we (and many guidelines) treat accuracy as a prerequisite for quality, it is possible for quality information to be incomplete, and for accurate information to be of low quality. However, each of these three indicators is essential in order for the information to be actionable.

Incorporating Information Needs and Usability Concerns in Systems Design

Effective E-health resources anticipate users' needs and actions and present clear pathways to desired information; problems with interface design and the underlying information structure can severely limit their usefulness to consumers. Designing usable websites is especially challenging if target users have limited levels of health literacy, lack computer experience, or suffer from disabilities that complicate resource use.66

In reality, attention to actual users varies. Some articles cite, in passing, the use of "frequently asked questions" of library patrons or website visitors in design or redesign of information-oriented publications and websites. Chason 69 describes a published directory of Florida psychiatrists that was created by the staff of a mental health facility library because this resource was frequently requested. Ritter et al. 70 performed task analysis of user groups and examined documentation of their work productions (e.g., search engine logs), to assist in building academic department websites. The National Cancer Institute reports using a multifaceted approach to assessing audience needs and gathering feedback from users via its CancerNet website. 71 Cole et al. 72 also developed an information retrieval system using a differential diagnosis model. User need was measured according to its fit with Kuhlthau's six discrete stages of the information search process: task initiation, selection, exploration, focus formulation, collection, and presentation. 73

Although the problem of user needs assessment and usability is not unique to health websites, the latter frequently often share some common challenges and characteristics. Health websites are designed for widely diverse audiences (where user needs differ), and there is large variance in user background knowledge and computer experience. For example, ClinicalTrials.gov, the largest existing database of clinical trials, provides information to patients and caregivers, the press, clinicians wishing to make a recommendation, academic researchers conducting systematic reviews, medical journal editors, and policy makers. 74 Health information resources also can provide scientifically complex and detailed information to individuals who may lack the cognitive skills and vocabulary necessary for effective navigation. As a result, designers need to carefully provide opportunities for both searching and browsing, and offer several hierarchical structures for browsing the data (e.g., grouping diseases both by bodily systems and by demographics groups they affect). 75 Similar to the challenge of health literacy, consumer health informatics can improve the usability of consumer health resources by assessing or estimating relevant user demographics, and then provide tools to tailor the interface to different audiences.

Overall, the literature suggests that patients, family, and caregiver opinions on what information they need deserves more attention in systems design.67 Greater attention also is needed to usability issues that are specific to consumer E-health resources for diverse audiences.

Assessing Health Literacy for Information Tailoring

Health literacy measures can be subdivided into three categories: (1) health literacy screening measures, (2) large-scale national surveys of general adult literacy, and (3) research studies' tasks measuring specific, narrow components of health literacy (which are outside the scope of this review). Two frequently used health literacy screening measures include Rapid Estimate of Adult Literacy in Medicine (REALM) 76 and the Test of Functional Health Literacy in Adults (TOFHLA). 77 These measures do not provide comprehensive assessment, but assess competency in selected domains that are supposed to be representative of overall health literacy. The REALM is a vocabulary test that requires reading and pronouncing 66 health-related terms of increasing difficulty. The TOFHLA includes a 50-item reading comprehension section that employs modified Cloze (sentence completion) procedure for measuring prose literacy plus a 17-item long multiple-choice "numeracy" section based on real medical documents. The advantages of these tests are a relative ease of administration and some intuitively appealing scoring categories (e.g., grade levels). Both measures also exhibit good psychometric properties, and are highly correlated with each other and with general vocabulary tests. 23

However, the Institute of Medicine notes "neither the REALM nor the TOFHLA capture the full complexity of the construct of health literacy." 25 Although these measures may be good screening tools, they cannot identify specific areas of health literacy where an individual might need support (e.g., health concepts that need to be taught). 23

The second category of health literacy assessment involves large-scale national surveys of general adult literacy, which often include tasks that are situated within health contexts. The National Adult Literacy Survey (NALS) measures three aspects of literacy: prose literacy, document literacy, and quantitative literacy.78 The NALS assessment is based on tasks of increasing difficulty that are taken from texts and documents drawn from six everyday contexts. The easiest tasks require locating information, and the most difficult involve generating inferences and formulating/performing required numerical operations. Participant raw scores on each subscale are categorized into Levels 1 through 4. Health-related NALS activities provided a basis for the compilation of the Health Activities Literacy Scale (HALS).

Health literacy surveys are grounded in more complex literacy constructs than REALM and TOFHLA, and are more likely to generate the information needed for successful interventions. However, health literacy surveys also have important limitations that should be addressed in the next generation of health literacy assessment tools. For example, health literacy surveys do not encompass the multidimensional dynamics of how persons engage, understand, and act on health information, especially if one considers the conceptual framework raised in the first subsection of this article. Current measures are not based on an explicit theoretical health literacy framework, and fail to measure several important aspects of health literacy, such as oral literacy skills, conceptual understanding of health-related constructs, health vocabulary knowledge, and cultural beliefs. In addition, current measures do not provide a comprehensive assessment of health-related quantitative skills (or numeracy), are very dependent upon reading skills, and often cannot distinguish between health and general literacy. Finally, current tests do not evaluate basic technical competencies, which are essential in today's technology-driven health care environment.

Consumer health informatics creates the promise to ease the task of comprehensive assessment via adaptive testing techniques and making health literacy-based approaches more audience tailored, multidimensional, and pragmatic. However, health literacy needs additional operationalization and specificity to reach its potential as a robust independent or dependent variable in both consumer health informatics and clinical outcomes research.

Conclusion: Recommendations and Directions for Future Research

In an era in which the public is asked to play an increasingly active role in their health care, consumer health informatics seeks to bridge the digital divide and support more consumers' ability to understand and author health information. However, this promise is ripe with challenges and potential pitfalls, as this article attests. Fortunately, the same challenges present an exciting time for the field, with a surplus of interesting theoretical and applied research problems to address.

Throughout this article, we discussed the potential of informatics to support consumers by bridging two gaps: (1) between user needs and the content of information resources, and (2) between user competencies and resource complexity. With respect to user needs, novel methods to map how persons converge on health information resources need to be developed. In doing so, it is important to be mindful of the aforementioned current emphases on horizontal communication from health authorities to consumers, from consumers to health professionals, and among consumers, as well as among all possible participants in the creation of the public's health information and health care policy environment. A related issue is to explore ways to employ informatics tools to assess the quality and gently moderate consumer-generated content in venues such as online discussions and personal health records.

The authors believe informatics support has the potential to enable developers to match user competencies and resource complexity. However, the devil is in the details-significantly more work needs to be done to ascertain the demographic and situational characteristics that affect information needs and processing. One potentially promising technique is log analysis, frequently used in market research consumer segmentation. An underlying architecture of resources that permits customization is another interesting approach that merits consideration. In addition, the authors believe the field needs advances in the areas of consumer health vocabulary development and readability measurement.

Yet, there are no shortcuts to encompass the dimensions of health communication that are outlined in the article's opening subsection. Mindful of the challenges, the authors make the following specific recommendations to consumer health informatics researchers and designers:

1. Consumer health informatics research and design should focus on drawing upon communication and social science research that addresses the social and emotional aspects of information seeking and acquisition behaviors. The understanding that health communication is horizontal and multidirectional (not top-down or unidirectional) needs to be a conceptual lynchpin of consumer health informatics research.

2. In reaching out to health consumers, the field should make use of a wide range of traditional and novel health information resources, from static informational Web pages to patient forums and virtual reality environments. A wide range of tools and resources should also be used to educate consumers about health issues and improve health literacy. These may include traditional informational pages and portals, as well as dictionaries, encyclopedias, tutorials, risk calculators, and information visualization tools.

3. Patients' and consumers' information needs and usability concerns should be given more consideration. Additional research is needed to understand the public's information needs as they pertain to health.

4. In order to support users with limited health literacy and bridge the digital divide, resources should aim at tailoring information content and presentation to intended users, or targeted audiences. This requires systematic research into the effect of various user characteristics on information behavior, and better tools for assessing the known facets of health literacy.

5. Reaching health consumers with the appropriate information can be improved via further development effort in the areas of consumer health vocabularies, information retrieval, and readability. Research in this areas can benefit from drawing on large amounts of existing data recorded by consumer E-health communication applications (e.g., queries, e-mails, and usage logs).

6. More accurate, well-publicized information quality indicators will benefit health consumers. These resources also need to be better maintained over time.

7. Greater research attention needs to be given to health information needs of caregivers, family members, and peer groups. Additional research is also needed into health information needs and information-seeking patterns of special populations (e.g., ethnic minorities, individuals with disabilities).

Consumer health informatics practitioners and researchers sometimes disagree on whether the primary goal of health communication and providing health resources is to provide clear, usable information or to promote behavioral change. In either case, all might agree that it is desirable to motivate educated consumers. Although many health educators are concerned about the clarity of their message, fewer worry about the "attractiveness" of the message to people whose health is not immediately affected (e.g., healthy smokers). This is yet another area where informatics can benefit by adopting techniques from marketing, entertainment, and the news media. The opportunities for research and application are numerous, as are the challenges. The field of consumer health informatics is at an exciting point, where new developments can bring innovative solutions to the challenge of effective communication with health consumers.

The authors thank the participants in the round table discussion during the AMIA 2007 Spring Congress for their valuable input in conceptualizing the paper: Andrew Broderick, Betty Chang, Kevin Clauson, Milton Corn, Leanne Currie, Helena Deus, Guy Divita, Lorie Donelle, Patricia Dykes, Margo Edmunds, Ijeoma Eleazu, Jennifer Garvin, Vojtech Huser, Ellen Jacobs, Ilene Kesselman, Moon Hee Lee, Olivier Lequenne, Lucila Ohno-Machado, Peggy Peissig, Hyla Polen, Rita Scichilone, Yalini Senathirajah, Frank Sonnenberg, Justin Starren, Duane Steward, Henry Wei, Joseph Wu, Rita Zielstorff. The authors thank Lucila Ohno-Machado, Elmer Bernstam, and two anonymous reviewers for their comments on earlier versions of this article.

References

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Developing Informatics Tools and Strategies for Consumer-centered Health Communication

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As the emphasis on individuals' active partnership in health care grows, so does the public's need for effective, comprehensible consumer health resources. Consumer health informatics has the potential to provide frameworks and strategies for designing effective health communication tools that empower users and improve their health decisions.

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Ten tips for receiving feedback effectively in clinical practice

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Ten tips for receiving feedback effectively in clinical practice

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How we can use patient feedback more effectively to improve care

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How we can use patient feedback more effectively to improve care

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Abstract

Patient feedback is an important source of information that should help staff implement changes that will improve care quality and patient safety. A recent study exploring why staff might find it difficult to use patient feedback constructively found there are a number of prerequisites to effective and lasting change. Achieving such change requires: a willingness to act; staff at ward level having autonomy, ownership of the problem and resources to act; and the organisation being ready and able to support change. This article discusses findings from the study and gives examples of successful and unsuccessful change. It not only highlights what is needed at ward level to make change happen, but also illustrates the need for corporate nursing and senior management to get involved and facilitate change.

Citation: Moore S (2018) How can we use patient feedback more effectively to improve care? Nursing Times [online]; 114: 12, 45-48.

Author: Sally Moore is patient safety research nurse at the Bradford Institute for Health Research.

This article has been double-blind peer reviewed

Scroll down to read the article or download a print-friendly PDF here (if the PDF fails to fully download please try again using a different browser)

Introduction

Patient feedback is a valuable source of information and should be used to improve the quality and safety of the care we deliver, but do nurses use it to make improvements in service areas? If not, what are the barriers that are stopping us from doing so? This article highlights what is needed - but also often lacking - to make lasting change that is based on patient feedback, as found by Sheard et al's (2017) study.

Collecting feedback is not enough

After the publication of the Francis report (2013) in the wake of care failings at Mid Staffordshire Foundation Trust, organisations delivering healthcare could no longer afford to prioritise meeting targets and cutting costs over the needs of patients (National Advisory Group on the Safety of Patients in England, 2013). The publication of The NHS Constitution for England (Department of Health, 2015) and the pledge to put the patient "at the heart of everything the NHS does" have led to a proliferation of methods and tools to help patients give feedback about their healthcare experiences (Coulter et al, 2009).

This does not mean patient experience questionnaires are new - the national inpatient survey has been running since 2002 and the Friends and Family Test since 2013. However, the questions we need to ask are:

What do we do with all the feedback we receive from our patients?

Why is it so hard for the feedback to be acted on?

In the 2015/16 NHS staff survey (NHS Survey Coordination Centre, 2016), 62% of respondents from acute trusts believed that service user feedback was collected in their department, but only 14% strongly agreed that it was used to inform decisions within the department or directorate. Have we become focused mainly on collecting and measuring feedback and performance, rather than on using the data to make positive changes for our patients (Coulter et al, 2014)?

According to the NHS Confederation (2010), in some trusts, there have been "unspoken but widely held beliefs" that providing good patient experiences is "nice but not necessary" or "nice but too expensive". However, if we are merely measuring and monitoring, how can we be working within the NHS constitution's promise that "NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers" (DH, 2015)?

Patient Feedback Response Framework

Sheard et al (2017) examined how ward teams use patient feedback to influence change in their clinical areas. Their work was part of a large clinical trial of a complex intervention conducted in 33 wards across three trusts in the North of England (Lawton et al, 2017).

Patients completed an 'experience of safety' questionnaire and reported safety concerns, which were then fed back to ward teams so they could make changes based directly on those concerns. There were two phases in this cyclical process (undertaken six months apart) and patient feedback was given to 17 wards in the intervention arm of the trial.

Using staff interviews and observing how the ward teams used and acted on the feedback, Sheard et al (2017) developed a conceptual framework - the Patient Feedback Response Framework (PFRF) - to explore why staff might find it difficult to respond to patient feedback. The framework comprises three stages of action that are required to make effective and lasting change:

A willingness to act to address an issue (normative legitimacy);

The necessary autonomy, ownership of the problem and resources to be able to act (structural legitimacy);

The organisation being ready and able to support change (organisational readiness).

These concepts are detailed further in Table 1 and illustrated as a simple flowchart in Fig 1.

Normative legitimacy

Among the 17 wards in their study, Sheard et al (2017) identified that, during the two phases of feedback and action planning:

The willingness to address an issue (normative legitimacy) was part of the culture in 11 ward teams - however, in two of these, the focus was on managing patients' expectations rather than looking at making any changes that would address the underlying issues that had been raised;

Of the six remaining ward teams, two had developed an understanding and had begun to appreciate the importance of acting on patient feedback by the second phase of action planning;

The remaining four ward teams (of the six previously mentioned) were not interested in patient feedback - they dismissed it and displayed some hostility towards both the researchers and their data.

This behaviour is not unusual. Reeves et al (2013) cited examples of nurses deciding that feedback from the NHS survey at hospital level was not relevant to them because "that never happens on my ward".

Lessons can be learnt from The Report of the Morecombe Bay Investigation (Kirkup, 2015), which shows that midwifery staff repeatedly denied that there were problems and rejected criticism from patients. At a time of pressure on the nursing workforce, it is positive to see that the majority of ward teams in Sheard et al's study did have normative legitimacy - they wanted to listen to their patients.

Structural legitimacy

Sheard et al (2017) identified that eight out of the 11 ward teams with normative legitimacy also possessed some degree of structural legitimacy; four of these eight teams chose to make changes where they had the autonomy and resources to do so successfully. For example, one team decided to modify the role of the discharge nurse to stop patients being given conflicting information about their discharge. However, some of the plans were stalled because ownership, autonomy and/or resources were lacking. As an example, three teams made action plans to implement new initiatives and gave the task to a particular staff member, who then either left the ward or went on long-term sick leave or maternity leave; the task was not delegated to someone else - usually because there was no one who had the capacity to attend to it. Ward staff lacked collective ownership of the problem and the resources to carry out their action plans.

Another example shows that a lack of autonomy can delay change. One of the ward teams developed a patient information leaflet that they could not use until the hospital reading panel had approved it. That panel did not meet regularly, so the leaflet still had not been implemented six months after being written. This team did not have the autonomy to roll out the leaflet on their ward until it had been approved by someone else.

Nurses at all levels will know examples of changes that have been stalled. Would these changes have been successful if nurses had been given support by senior members of the trust's nursing team? In 2009, the Royal College of Nursing identified the role of ward sister or charge nurse as key to the delivery of high-quality, safe patient care and positive patient experience. Sheard et al's study raises questions about the authority of these roles to actually "manage the ward and staff" (RCN, 2009). It shows that, although it is the ward sister/charge nurse who is accountable and responsible for standards and delivery of patient care, they do not always control the resources to manage that care. In some cases, signatures and/or approval from staff with more seniority are required even for minor changes in the ward sister/charge nurse's service area.

During the study, the researchers noticed a higher-than-anticipated level of ward staff movement. They described this as "staff flux" and observed that it often led to ward teams focusing on care delivery until stability returned, which delayed the completion of any action plan. From the perspective of a ward sister/charge nurse, resources to act also include having:

A stable team;

Time to meet to discuss patient feedback and plan actions to be taken.

The first two examples of successful change described in Box 1 illustrate this; interestingly, neither of these had cost implications.
Box 1. Successful change: examples

One ward team extended their visiting hours to prevent a rush of relatives all requesting information at the same time. The visiting hours had previously been 2-4pm and 6-8pm, as in most of the hospital, but were changed to 2-8pm. Staff involved in the action plan considered it "radical", as it was a major change to the ward's structural processes. However, the action planning group had the necessary autonomy and ownership, and very little resources were required to make this change happen.

On one ward, patients had reported frustration at receiving conflicting information about the discharge process. The ward team decided to modify the role of the discharge nurse so each patient would be given dedicated time to discuss discharge and, most importantly, be kept informed if their discharge was going to be delayed.

On one ward, five patients had reported to researchers over a three-week data collection period that they had waited a long time for staff to answer their call buzzer (Lawton et al, 2017). This had often happened at night and had resulted in patients becoming incontinent because staff were not available to help them with toileting. The ward manager wanted an extra qualified nurse for three nights a week to address the staffing problems and the team made an action plan to achieve this. The ward manager reported the patients' concerns to the corporate nursing department (via an electronic system that records patient safety incidents) and escalated them to the hospital board. Senior management responded and authorised the ward manager to go over budget to ensure there were three qualified nurses on the ward every night.

Source: Adapted from Sheard et al (2017)

Organisational readiness

The third stage of the PFRF highlights two types of organisational support required if the ward team does not have the autonomy and resources to act:

Interdepartmental working;

Senior hospital manager/board-level support.

The examples of failed or stalled changes in Box 2 show a lack of organisational support, both at interdepartmental and at trust committee level.
Box 2. Failed or stalled changes: examples

One ward team needed assistance from the pharmacy department to change procedures around dispensing controlled drugs, but the pharmacy department was not willing to help.

One ward team found that a leaflet they had written had been awaiting approval from the hospital's reading panel for several months; six months after having been written, the leaflet had still not been implemented.

One ward team wanted to improve communication with theatre staff, but theatre management was not interested in helping them achieve that change.

Adapted from Sheard et al (2017)

In the third example of successful change (Box 1), concerning low staff levels at night, because the ward sister lacked the financial resources to employ more staff, she used the patient feedback in a different way and highlighted the staffing issues to the corporate nursing team and senior management. She gained organisational support and was given approval to overspend on staffing, which supported the team to deliver safe care at all times. The ward sister was able to retain responsibility for care that is inherent in the role.

The evidence about low staffing on the night shift had been given by patients and was used to support a request for safe staffing made in a structured report, which is much more difficult to ignore than constant complaints from teams. This also demonstrates the need to keep collecting patient feedback after changes have been made - in this way, it is possible to demonstrate whether those changes have made a difference.

In large-scale projects such as The Productive Ward (Morrow et al, 2012), organisational support from board level down is a key to success. In that instance, both kinds of organisational support were available where needed. One of the drivers for organisational support for The Productive Ward was that the change could be measured and outcomes seen from an early stage. This is worth remembering when seeking organisational support.

In this final stage of the PFRF, corporate nurses/matrons have the power to support teams to make meaningful change for patients. Would the third example of unsuccessful change (Box 2), in which ward staff wanted to improve communications with theatre, have failed if the senior nursing team in both areas had facilitated the initial communication?

It is important that change is planned with staff at team/ward level rather than imposed on them (Morrow et al, 2012). Although some support may be required, it must be given with care and consideration.

Conclusion

To be able to make meaningful and lasting change as a result of patient feedback, we need to focus on the role of the ward sister/charge nurse and senior nursing team, as well as on the relationship between them. Sheard et al (2017) have illustrated that organisational readiness is vital to enable change to happen and is often the missing link that leads to failed change and unsuccessful innovation.

How can we, as nurses, ensure that organisations support our initiatives? For patients to be truly listened to, the PFRF should not only apply to teams at a ward level but also be adopted by nurses at corporate level. Corporate nursing teams within organisations need to have the capacity to respond to ward teams' requests for changes that will improve patient care. If the culture at a senior level is such that there is no interest in enabling improvement at ward level, we can only ever expect small-scale changes to happen. Box 3 summarises the key factors that must be in place for change to be implemented successfully in response to patient feedback.

Nurse leaders are key to engaging staff across all disciplines and areas of care to work together to support positive change based on patient feedback. Patient feedback can be a powerful tool, if we all listen to it and then use it wisely.
Box 3. Key factors for successful change in response to patient feedback

Ward teams need to want to change

Ward teams need to actively listen to patients

Ward teams need to have ownership, autonomy and resources

Ward sisters/charge nurses need to have the authority to enact changes

Nurses leaders need to empower teams and provide organisational support as and when required

Key points

Patient feedback is widely collected, but much less often acted upon

A study has examined how ward teams use patient feedback to change practice

Change requires a willingness to act, autonomy and organisational readiness

Ward sisters/charge nurses and senior nursing teams have a key role to play in making change happen

If it is listened to and used wisely, patient feedback can be a powerful tool

# data[].attributes.attachment_link.title
How can we use patient feedback more effectively to improve care?

# data[].attributes.attachment_link.description
Patient feedback is an important source of information that should help staff implement changes that will improve care quality and patient safety. A recent study exploring why staff might find it difficult to use patient feedback constructively found there are a number of prerequisites to effective and lasting change.

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Public Health Emergency Preparedness and Response Capabilities

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Public Health Emergency Preparedness and Response Capabilities

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Public Health Emergency Preparedness and Response Capabilities

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Office of Public Health Preparedness and Response.

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Using Feedback to Improve Responses and Promote Readiness

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Using Feedback to Improve Responses and Promote Readiness

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Abby Smith

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Informatics Tools to Support Communication and Dissemination

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Informatics Tools to Support Communication and Dissemination

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Jamie Lafond

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Example of Public Health Emergency Response Plan

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Example of Public Health Emergency Response Plan

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The value of health emergency preparedness exercises

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The value of health emergency preparedness exercises

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What is the value of health emergency preparedness exercises? A scoping review study

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Emergency exercises involving the health community are considered an important and integral part of emergency preparedness activities. However, little...

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Public health emergency preparedness: a framework to promote resilience

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Public health emergency preparedness: a framework to promote resilience

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Yasmin Khan, 1, 2, ³ Tracey O'Sullivan, ⁴ Adalsteinn Brown, ⁵ Shannon Tracey, ¹ Jennifer Gibson, 5, ⁶ Mélissa Généreux, 7, ⁸ Bonnie Henry, ⁹ and Brian Schwartz 1, ⁵

Abstract

Keywords: Public health, Emergency preparedness, Emergency management, Disasters, Disaster risk reduction, Resilience, Qualitative research, Complexity theory

Background

Emergencies and disasters impact population health, as we face diverse hazards influenced by complexities in our environment, demographics and social constructs. Novel and re-emerging infectious diseases continue to cause morbidity and mortality and can rapidly spread beyond borders. In Canada, wildfires have resulted in large population evacuations, air pollution and deaths [ 1- 3]; floods are an annual risk causing displacement of Indigenous communities, urban infrastructure damage and adverse health impacts [ 4- 6]. The 2013 Lac-Mégantic train derailment and explosion resulted in 47 deaths, environmental contamination, and adverse mental health impacts [ 7, 8]. Reducing risks and the short and long-term impacts of all-hazards emergencies on population health is a key responsibility for the public health sector [ 9, 10]. Public health plays a critical role in working with health and non-health sectors responsible for preparing for and responding to emergencies, yet have limited resources and competing priorities in delivering community health protection and promotion programs. While emergencies tend to raise awareness about the significance of being prepared, public health agency readiness activities operate largely in the background until an event occurs. Despite the importance of upstream readiness, a persistent challenge for public health practitioners is defining what it means to be prepared [ 11- 14].

Defining preparedness using an evidence-informed approach is challenging, due to the general lack of evidence to inform disaster risk reduction (DRR) for public health [ 15]. To our knowledge, there are few published frameworks for public health emergency preparedness (PHEP) or DRR which used empirical methods in derivation [ 11, 16- 20]. Some frameworks reflect authors' opinion [ 11], others describe some form of stakeholder consultation process; however, the methodology used to achieve consensus lacks detail [ 17, 21] and there is no widely accepted framework that can be used to guide and compare efforts.

In reviewing the extant literature, we note most country-specific PHEP frameworks were developed in the United States (US) and have unclear relevance to other settings with substantially different health systems and governance structures [ 16, 22, 23]. Outside the US, the European Centres for Disease Control has adapted a US model [ 19, 24] in considering core competencies for cross-border threats across the European Union [ 20, 25]. Globally, there are a number of frameworks and initiatives that have relevance to PHEP and DRR [ 26- 28]. The World Health Organization (WHO) framework to inform emergency preparedness is based on consultation with global stakeholders and lessons learned [ 28]. The framework is designed to be relevant to health systems globally and emphasizes national, subnational and local connections. The United Nations Sendai Framework for DRR has four key priorities and takes a whole-of-society approach [ 27]. It expands on its predecessor, the Hyogo Framework, with specific reference to the health impacts of disasters and reducing risks. These frameworks highlight the importance of national action and global collaboration to improve health system preparedness and reduce disaster risks; however, empirically-derived and contextually-relevant evidence to inform public health actions for local/regional public health agencies remains a knowledge gap.

In the aftermath of the 2014-16 West Africa Ebola Virus Disease outbreak, the WHO called on all countries "to create resilient integrated systems that can be responsive and proactive to any future threat" [ 29, 30]. Resilient systems have been defined as: "those that rapidly acquire information about their environments, quickly adapt their behaviors and structures to changing circumstances, communicate easily and thoroughly with others, and broadly mobilize networks of expertise and material support" [ 31]. A challenge with existing PHEP frameworks is an inconsistency of elements or components, and lack of consideration for PHEP as part of a system [ 22, 24]. For example, social capital was missed in one framework, when disaster resilience research has noted the importance of both hard, or physical, infrastructure and soft, or social, infrastructure [ 32, 33]. Further, none of the identified frameworks articulate a consideration for the role and contribution of values in PHEP, yet Canadian experiences have underscored the importance of ethics and values. Questions such as "Who will get the limited supply of antivirals and vaccines?" cannot be informed solely by science, and failure to acknowledge underlying value judgments can result in a loss of public trust and low health worker morale, impacting community recovery after an event [ 34- 37]. Incorporating ethics and values explicitly could add to the legitimacy and usefulness of a PHEP framework.

The knowledge gap that exists with PHEP frameworks thus extends to their comprehensiveness to reflect the dynamic and social context of public health emergencies and the complex public health system. Resilience-oriented interventions for community disaster preparedness have been proposed by accounting for the complexity of the emergency context and we argue that complexity is the backdrop that must guide strategy in re-framing PHEP [ 32]. Complexity as a theoretical approach is described as a set of concepts and analytic tools that can be applied to understand various properties of systems and is potentially useful in developing management or intervention strategies [ 38- 44]. This theoretical foundation is necessary in developing a PHEP framework to provide the depth required to account for the emergency context, a complex adaptive system like the public health system, and building resilience.

In this paper we present an empirically-derived and theoretically-informed framework for emergency preparedness to inform local/regional public health agency practice. Our objective is to describe the essential elements of a resilient public health system and how the elements interact as a complex adaptive system.

Methods

This study is part of a two-phase project that aims to advance performance measurement for public health emergency preparedness (Additional file 1) [ 45]. The overall project approach is an exploratory, sequential, mixed methods model to inform the development of indicators for PHEP (Additional file 2). The two-phase project is based in Canada and this paper reports findings from phase 1, corresponding with the first objective stated above. Several papers are planned from the overarching project.

For phase 1 we used a qualitative design employing the Structured Interview Matrix (SIM) facilitation technique in six focus groups across Canada [ 46, 47]. As an applied public health project, the study was structured to include Integrated Knowledge Translation (iKT) and knowledge users who are defined as individuals likely to use research results to make informed decisions about health policies, programs and/or practices [ 48]. A steering committee of knowledge users provided input on study milestones to ensure that the research was relevant and useful to the field [ 48]. Detailed reporting for this qualitative study is found in the Consolidated Criteria for Reporting Qualitative Research checklist (Additional file 3).

In planning the SIM focus group sites, we included anglophone and francophone communities and focused on representation of Canadian regions with diverse experiences with public health emergencies. Recent emergencies and disasters include emerging infectious disease outbreaks, industrial disasters, wildfires, extreme weather and planned mass gatherings. The six sites spanned four provinces in Canada, representing Atlantic, Central, and Western regions. The focus groups were held in two urban centres, three urban-rural communities, and one rural location [ 49- 51]. Ethics approval was obtained from the Public Health Ontario and University of Ottawa Ethics Review Boards.

We used purposive and snowball sampling to ensure diversity of expertise and involvement of people in senior decision-making roles [ 52, 53]. Between eight and 40 participants can participate in one SIM session [ 46]. Optimal rich data generation balanced with feasibility of recruitment and flow of the session is observed with 16-24 participants, thus informing our target SIM size. Participants represented the public health system at multiple levels (local/regional, provincial, federal), with an emphasis on local/regional public health as the unit of public health delivery in Canada. Participants from other sectors involved in aspects of PHEP were recruited to reflect the complex adaptive system. Public health participants consisted of decision-makers or experts at multiple levels. Participants from health care and the health system consisted of senior decision-makers or professionals with expert knowledge of emergency preparedness for the health care sector (e.g., primary care, acute care) and linkages with public health. Government and policy-maker participants included decision-makers from health ministries or emergency management agencies of government, with expert knowledge of emergency preparedness. Community, social service or private industry participants included senior decision-makers or professionals in community organizations with expert knowledge of and roles in emergency preparedness and service provision for high-risk populations.

For recruitment, the research team and knowledge users generated a list of potential participants and organizations. Invitations were distributed by email. Informed consent was obtained from each research participant prior to participation in the study. Data generation occurred over a three month period from April to June 2016. Focus groups were held in a professional meeting space during working hours separate from participants' workplaces and were 2.5 h in duration.

The three-part SIM facilitation technique consists of one-on-one interviews, small group and plenary discussions (Additional file 4) [ 46]. Data collection for the SIMs was anchored around four questions developed by the research team, refined with knowledge user input, and piloted. Equity and ethical considerations related to emergencies informed the data collection approach. The final four questions are found in Table . The English focus groups were facilitated by a study co-investigator (TO) who is a doctoral-trained qualitative researcher with extensive experience in implementing SIM focus groups. The French focus group was facilitated by an experienced bilingual facilitator who was involved in developing the SIM technique for application in research settings. Focus group resources were translated to French by a professional translator. Both facilitators have experience collaborating on SIM implementation for research and use a consistent approach. Facilitators' credentials and experience in the field of emergency/disaster research were shared with participants.

Table 1

English version

Version française (French version)

1.

What are key elements of preparedness for the public health system pertaining to outbreaks and infectious disease emergencies?

Quels sont les principaux éléments de la préparation du système de santé publique concernant les urgences liées aux éclosions et aux maladies infectieuses?

2.

What are key elements of preparedness for the public health system pertaining to natural disasters or anthropogenic emergencies?

Quels sont les principaux éléments de la préparation du système de santé publique concernant les urgences liées aux désastres naturels ou les urgences anthropiques?

3.

What makes the public health system resilient?

Qu'est. qui fait que le système de santé publique est. résilient?

4.

Based on your emergency preparedness or response experiences, what situations have you encountered where you have had to consider values or fairness?

Selon votre degré de préparation aux situations d'urgence ou de vos expériences en matière d'intervention, dans quelles situations avez-vous dû tenir compte des valeurs ou de l'équité?

Each focus group was attended by the facilitator, the Principal Investigator and two research team members in addition to research participants. The facilitators interacted directly with participants for data collection. For the majority of sites, participants had no knowledge of any research team members prior to the SIMs. Exceptions to this were knowledge users from the steering committee who participated in SIMs in their region. A small group of participants at one focus group were familiar with the facilitator (TO) from prior research initiatives.

The data generated during the SIM sessions included field notes, audio-recordings of small and large group discussions, and observations from the research team [ 46]. Participant checking occurs in the third part of the SIM focus group, as participants confirm the data during the plenary discussion. Audio-recordings were transcribed verbatim at the Resilience and High Risk Populations Research Lab at the University of Ottawa. Transcriptions were performed by students supervised by a graduate trainee in qualitative methods and were all familiar with the SIM method and process. Each transcript was checked for quality and accuracy. The data from the French focus group were translated to English for analysis after transcription.

Qualitative content analysis was conducted in several steps (Additional file 4) [ 46, 54]. Interview field notes were used to develop the coding grid by four team members. The final coding grid is provided in Additional file 5. Transcripts from small and large group deliberations were coded by two research team members iteratively until agreement was reached on application of the grid to the data. Subsequently, one team member coded the remaining transcripts. NVivo™ 10 software was used for qualitative data management. The coding reports were analyzed inductively to identify emergent themes, which were revised until consensus was reached.

The themes represent collective responses at the system level for all the questions pertaining to the essential elements of PHEP, resilience in the public health system, and the consideration of ethics in PHEP. The research team involved in analysis included both insider and outsider perspectives in terms of positionality in relation to the PHEP field. Expertise of the team included public health, health emergency management, disaster risk reduction, ethics, and health systems and services. The themes were developed iteratively and went through several revisions incorporating input from the knowledge user steering committee.

Complexity theory was applied as a lens to the themes by two authors (TO and YK) to explain how different elements of the framework account for tenets of complexity. Theory on complex adaptive systems, health systems and emergency management were used to inform our complexity approach [ 40, 42]. The seven tenets applied in analysis relate to characteristics of complex systems (dynamic context; interconnectivity; feedback loops; emergence) and change (adaptability; self-organization; non-linearity) [ 40]. Each thematic description below finishes with an explanation of its complexity as an element of PHEP. A more detailed description of the methods and results from the complexity analysis will be presented in a separate paper.

Results

A total of 262 individuals were approached to participate in a SIM at a fixed date, time and place in their region. We over-sampled given travel required away from participants' workplaces and the substantial time commitment during working hours. The number of participants across Canada who accepted the invitation was 146. In some instances interest exceeded the capacity of the focus groups. In deciding allocation for participation, priority was given to ensure a diverse participant mix based on the sampling strategy. Of the 146, 19 individuals across the six sites were unable to attend the focus groups. Reasons cited included professional conflicts and illness. Three individuals who did not attend sent a delegate.

The final sample represents a total of 130 participants who attended the six focus groups. Participation in the focus groups ranged from 15 to 33 across the six sites. The smaller sizes for focus groups corresponded with smaller sized communities. Focus group size for each site in relation to geographic regions in Canada is displayed in Table . Focus group sites are denoted by an anonymized letter. Diversity in the sample was achieved with representation across the complex adaptive system of PHEP is also displayed as Table .

Table 2

Site

Geography

Urban vs rural characteristics

Public health (all levels), n = 44

Health system and health care, n = 31

Government and policy-makers, n = 41

Community, social services, and/or private industry, n = 14

Total, N = 130

The results of data analysis are presented in two sections. The first presents the emergent themes resulting from qualitative data analysis. The themes represent the essential elements of PHEP. For the remainder of this paper the themes will be discussed and referred to as elements. Eleven elements emerged from the data; these included one cross-cutting element ( governance and leadership) and 10 distinct but linked elements. The second section presents the developed framework and depicts the relationships of each element to the role of public health in the complex system of emergency management.

Governance and leadership: Integrated structures, partnerships and accountabilities with clear leadership to support a coordinated, interoperable system

Leadership as a concept is related to, but separate from governance. Both are foundational, cross-cutting elements for PHEP and form the basis for the PHEP system. The integration of public health with health and non-health sectors was identified as essential. Leadership is a mechanism for articulating the role of public health agencies in responding to emergencies from different types of hazards, and ensuring alignment between governance and agency plans.

"...before the plan can be developed you need to create a mandate. First clearly define the role of public health, then develop a plan to support that role...we know what our role is - other people may not understand." (Site F)

Coordination was highlighted as an important output of an integrated system of emergency management, and a lack of integration was described as a precursor for inconsistency and uncoordinated emergency actions. Finding the right balance of separation and connectedness in governance is paramount; where organizations are specialized yet still coordinated within an integrated system. Views on whether there is a need to bridge or to dismantle silos in public health varied across the sites, as evidenced in the following quotations:

"You don't want to pull down your silos, because those are your pillars of excellence, you need to build proper bridges in between those silos." (Site A)

"It's breaking those silos down. But I think we need to do it long before an incident occurs. So I think preparedness is the perfect time to begin building those relationships. And looking for those champions in each area... finding your experts, finding your resources." (Site B)

When we applied complexity theory to governance and leadership, the tenet of interconnectivity stood out as an important consideration when examining the role and influence of silos, and adaptively bridging or dismantling as required. Pre, during or post-disaster different sectors, organizations, and jurisdictions must collaborate to adapt to changing situational awareness. Governance structures which are sensitive to interconnectivity will support innovation when flexibility is required.

Clarity - in relation to authority, roles and responsibilities - was emphasized across all sites. The importance of identifying a lead agency and authority was underscored in relation to governance and leadership. Understanding where public health fits in the governance structure is important, as well as the governance and management models agencies use to organize their internal structure and its interface with the system. Incident Management or Command Systems were discussed in relation to the characteristics they enabled, such as adaptability. System flexibility is essential in a disaster, particularly in terms of interoperability. As a disaster unfolds, the context influences the way an emergency plan can be implemented, within and across organizations.

"For infectious disease it's fairly clear who has that lead ... public health is the lead in that. But when it comes to other kinds of disasters it's not as clear where does public health actually fit within all of that structure. So, we need to establish that leadership and whoever is going to take that leadership needs to know where does everybody fit." (Site F)

The role of public health as a collaborator was emphasized in discussions on leadership. In addition, roles related to prioritizing preparedness for emergencies, and leadership influencing a culture of preparedness within public health agencies. Leadership is dynamic and can emerge as organizations connect and understand the different and common constraints they face. Leaders with skills to bring different people and organizations to the planning table emerge as the planning and/or response evolves. The need for innovative or improved governance structures may also emerge as leaders assume new roles in planning and preparedness and the different factors influencing collaborative action are discussed.

Planning process: Develop a plan through a dynamic, collaborative planning process

This theme underscores the value of the process of planning in public health preparedness. Planning is important for clarifying roles and responsibilities, and understanding organizational structures and functions. Equally important is the development of relationships, which contributes to efficiency in preparedness and response. As evidenced in the following quotation, participants de-emphasized the static nature of the plan as a "book" or document, and discussed the planning process as the anchor for ensuring system adaptability and responsiveness.

"We call it planning, but it is more developing a process. ... in the sense of the [health system structure] where it's scalable and it encompasses all portions of it, not just public health. So don't think of it just as a plan like a book sitting on a table, it's more the whole aspect of everything that encompasses the response process." (Site B)

The planning process links with other elements of PHEP, as described by this participant and developed further in this section.

"And in the process of developing the plan, collaborating or communicating with others in the development of that plan. So, making sure that we are engaging each other, and stakeholder communities, in that plan so that we can develop role clarity as part of that process and get to know each other. Identifying the tools and resources that we would need to respond would be part of planning, and then investing in the training and, exercising that plan." (Site A)

PHEP planning is a complex process, given the multiple influences and interdependencies in public health emergencies. Planning must consider changing population demographics, political and environmental factors. It must take into account not only local and regional contexts, but also global influences. When changes occur within a complex adaptive system, interdependencies create a ripple effect and impact other parts of the system. This creates the opportunity for a feedback loop, which provides information that can be used to adapt. Readiness for emergencies depends on the ability of a system to adapt to changing circumstances, thus planning must be updated on an ongoing basis.

Collaborative networks: Develop relationships, partnerships and strong networks

Linked with planning process, collaboration emerged as a strong concept in participant discussions on resilience, particularly with respect to efficiency in response activities and organizational learning. Collaborative networks can support readiness, response and recovery across multiple levels of the system, and include stakeholders outside the public health system, whether in clinical care, emergency management, government or the private sector.

"Stakeholder engagement, so again the importance of this connectivity across the system and with others outside of the health system." (Site D)

"Well, how do you make a public health system resilient is collaboration and that's straightforward. Many groups working together, being able to understand what each other's roles are and what their strengths and weaknesses they bring; it's that collaborative framework that's going to make your public health system resilient." (Site E)

Collaborative networks are essential for accessing needed expertise, which in turn contributes to awareness and adaptive management as new knowledge is created and context changes. Sharing of expertise can be formal or informal, but is the cornerstone of strategic renewal in organizational learning. The concept of the networked system bringing together skillsets and resources contributes to emergence in the system. System behaviour can be unpredictable related to interactions between its components, and emergence pertains to how system behaviour emerges and the whole being more than the sum of its parts [ 40]. Further, networks are often the source of non-linearity, which may be positive or negative in nature. Non-linearity depends on feedback where cause and effect are not proportional [ 40]. Both positive and negative feedback contribute to change in the system as actors and parts interact over time.

"Sharing resources and skillsets, because we all bring to the table different skillsets." (Site C)

"It's important to have those trusted, open relationships to develop our individual skillsets, but also our collective ones." (Site C).

Trust develops through collaboration which can strengthen the connectedness and resilience of the networked system. In relation to complexity, the interconnectivity tenet is integral to the idea of partnerships and strong networks. PHEP is highly dependent on actors and the relationships between actors leading to adaptive response. Networks are inherently dynamic; people or actors within networks change, their relationships and personal networks are dynamic, and their experience / expertise also change. This ever-changing profile contributes to the dynamic nature of the entire system.

Community engagement: Understand and engage with the community

Collaboration with the community intersects with planning, in that it enables the consideration of community risks, cultural considerations and experiences. Planning that takes an inclusive approach and engages the public promotes common understanding of risks, assets and values, and can facilitate transparency between public health agencies and the community. Participants noted the link between resiliency among the public and the resilience of the public health system.

"Why Public Health is resilient is because the people are engaged...because of that, the mobilization of the vital elements is easy, and their engagement is built up through past experiences." (Site C)

The ability for community engagement to build trust between public health agencies/leaders and the public was recognized as crucial to public health protection for emergencies, and important in building long-term community support for emergency preparedness, response and recovery. Transparent and responsive engagement and communication with the public promotes credibility and trust for urgent population health messages such as boil water advisories or evacuation.

"It's the public trusting us as agencies... or the agencies being trustworthy enough that when the time comes the public goes 'I feel like I can rely on this as good pertinent information'." (Site D)

Community engagement is a mechanism to assist with difficult decision-making; specifically involving community groups in planning decisions that may impact them. Engagement with communities can promote the consideration of assets within particular groups, rather than focusing solely on deficits or vulnerabilities. Connection between public health agencies and the population whose health it aims to protect was described as essential to resilience in the public health system.

"There was no engagement with the communities that the plans were most meant to affect. So back to your equity question, there was a lot of concern in pandemic preparedness for vulnerable populations. So we brought vulnerable groups together who were identified in the plans and they told us 'why are you calling us vulnerable? Your plan is actually what makes us vulnerable in the first place'..." (Site F)

Communities are part of the complex system and interconnectivity is inherent. When considering community engagement, it is important to understand where the influential connections are in the community and how this can support or create challenges for response plans. Connections are important assets for public health activities across all phases of a disaster. They represent specific knowledge and communication channels that can support resilience.

It is important to recognize that community engagement is dynamic at different times and places, different phases of a disaster, and over time as community members change. Community engagement will emerge as the context changes and as opportunities are presented to contribute. Inclusive opportunities for engagement provide feedback loops to develop and contribute to innovation, situational awareness, and mobilization of resources.

Risk analysis: Robust understanding of community hazards and risks

Understanding risk is essential to inform planning; risk analysis is a critical contribution of public health agencies during an adverse event. While assessment of risk is a crucial first step in proactively understanding the dynamic and interconnected context of each community, it is important to follow it up with analysis and strategies to build capacity for resilience.

"... analytical capacity as a prerequisite to resilience. If the situation isn't analyzed correctly, you're going to have responses that are not appropriate. ... Analytical capacity, even being proactive, even before, in the area's risk profiles, that can make all the difference [for] resilience." (Site C)

Pre-existing disparities in the social determinants of health were emphasized as important pieces of the picture in understanding risk across a community and within specific populations. This underscores the link between risk analysis and community engagement as essential elements of PHEP, and the importance of inclusivity as a principle in planning.

"Social risk factors... poverty, disability, versus clinical, physical... pre-disaster someone may be a person with a disability or may not be a person with a disability, but when a disaster happens they may become higher-risk. Like, someone with mental illness for example likes routine all set, but when an emergency happens they've got to leave their home, they then become a person at risk." (Site E)

Conducting a thorough risk analysis implies strong partnerships and information-sharing capabilities in accessing information from other sectors. Risk analysis is an ongoing process for complex adaptive systems. Context is constantly changing. Situational awareness must be continually updated and shared - to understand the risk profile at any given time. The nature of risk within a complex adaptive system creates a situation where it may be challenging to anticipate consequences. Complex interdependencies can quickly cascade into serious operational issues when risk is realized in one highly interconnected part of the system. Risk analysis provides a means to understand environmental and contextual influences, and make contingency plans to account for interdependencies.

Surveillance and monitoring: Timely information to provide situational awareness and guide action

The essential element of surveillance and monitoring incorporates early detection and warning; situational awareness; and formal surveillance systems. Surveillance and monitoring includes routine public health surveillance such as formal lab-based and emergency department surveillance, some of which are legislatively mandated. Other information sources such as global situational awareness facilitate "early warning" that enable initial alerts of emerging risks to public health authorities and the broader system.

"We need to have intelligence to be able to know when to react... Because in case of emergency, you want to actually ensure that if something does happen, then you want to ensure that the right people are told in a timely fashion." (Site B)

The essential nature of surveillance and monitoring as an element was clear; however, there were apparent discrepancies in how well-functioning and resourced surveillance systems are across Canada, to support management of emergencies and disasters.

"For monitoring/surveillance, well, the importance of epidemiological monitoring, of what's happening elsewhere in the world to be able to increase our own vigilance, then adapt the network's capacities in greater detail based on that." (Site C)

"A big one, particularly around monitoring, gathering, and real-time information that comes back and feeds back to the people that need to know about it." (Site F)

Surveillance and situational awareness connect different parts of a complex system, and relate to collaborative networks, risk analysis and communication. For accurate surveillance and monitoring, it is important that interconnectivity be considered, to ensure actions taken in one part of the system are assessed in terms of how they may affect another part of the system. When one part of the system becomes aware of information that can impact another part of the system, it is important to share that information; these are essentially feedback loops which update situational awareness and inform decision makers if different actions must be taken.

Practice and experience: Invest in testing and practicing plans and processes

Whether practice occurs through simulations, exercises or experience in actual events, it was deemed essential for building capacity for response. Practice is a mechanism by which plans can be tested, gaps identified and processes tweaked. Two dimensions of experience emerged: 1) knowledge, skills and training of the workforce; and 2) application of the skills or training. The latter emphasizes practicing/testing plans and developing experiential learning for staff. Experience enables teams to revise protocols and provide feedback on parts of the plan that are no longer relevant or effective.

"... training, simulation. That really came up a lot. But not just training on the contents of toxicological evidence and all that, but also training on how to work in emergency mode, with whom, and then everyone's roles and responsibilities." (Site C)

Practice and experience enables and reinforces other elements of PHEP. Roles can be clarified, relationships developed and planning processes refined. Practice and experience can therefore function as a strategy to build resilience in the system.

"... roles, and responsibilities, and relationships are really clear and have been developed in advance. Those might be developed in advance through a variety of ways including through the planning process, through training, through exercises and also just through experience, so we get involved through responses together..." (Site D)

Evaluation of practice and experience enables a jurisdiction to understand if it is ready and potentially resilient to a threat. Practice and experience thus links with learning and evaluation (described below) and it is important that measures are collected consistently and completely. If practice is not possible through experience, it is closely linked with resources. Challenges arise if funding for relevant practice or simulations is lacking.

"We don't have any funding for drills or exercises to ensure that we are being resilient, because we have not had these kind of events we really do not really know what the level of our resilience is, it's theoretical." (Site D)

Through a complexity lens, practice and experience support resilience through feedback and co-evolution of the actors within the public health system and the entire system as an entity. Actors within the system must have the confidence and skills to adapt their activities and decisions as situational awareness changes. As teams or actors adapt, they co-evolve over time so that both actors and the system evolve together, based on practical experience.

Resources: Ensure dedicated resource capacity and mobilization capacity

Discussion around resources focused on two large aspects which are represented as distinct elements: first, physical, structural, and financial resources; and second, human and workforce assets. Human resources and workforce assets are discussed as a separate theme below. Structural/physical resources were described in terms of the capacity for systems and infrastructure to support elements of PHEP, such as adequate systems for risk analysis. Resources underpins multiple elements that require sufficient infrastructure and investment to function effectively.

"Resources is another thing, you just, you can't do this on the cheap. If you're going to do it, you've got to pay for it... Resources to invest in the actual structures and then the resources that are available to sustain function...as separate from people..." (Site D)

Participants highlighted intangible assets, such as time and organizational support so people actually have time to do emergency preparedness. Creating space in peoples' workloads for preparedness activities requires not only a cultural shift, but financial investment to show organizational commitment to ensuring resources are there for PHEP.

Difficult decisions surround allocation of limited resources. It was identified that there is a need for proactive decision-making around resource allocation as part of planning. This includes development of processes to assist with challenging resource decisions that emerge and are time-sensitive during the response phase. Transparency and consideration of diverse values and priorities in the community are also important for building trust.

With respect to the complexity of resource allocation for emergency response, the need for adaptability is paramount. At any time of year and during any phase of an emergency, the asset-profile of a community is dynamic. Feedback loops provide information about available resources that can be mobilized or gaps where resources need to be secured to enhance preparedness. When resources are limited, not available or hard to mobilize, self-organization will occur naturally as people and organizations work innovatively with what they have.

Workforce capacity: Develop and support knowledgeable, skilled and resilient staff

People and social infrastructure emerged as essential in PHEP. Knowledgeable people developed through training, experience, and possessing specialized expertise, are crucial assets to support resilience. Training was described in terms of content expertise, but also as relevant skills important for emergency management, such as communication and collaboration. Having sufficient human resources within the system provides redundancy (for back up) and supports interoperability.

"I think what we've heard is that people- it's about proper training and redundancy. And so, you have people that are well trained and there is enough of them. And this is all around being in the public health system being resilient, right? Staff resilience coming from being adequately funded, trained." (Site D)

Adaptability across different workforces involved in public health emergency response is a necessary ingredient for resiliency; and is part of the complexity. When unexpected events appear - or the context changes within a current event - the workforce must be prepared and skilled at adapting its response strategies. Supporting staff to deal with challenges during an event is an important organizational role and demonstrates reciprocity [ 55]. Staff may be directly impacted by an emergency as individuals in the community, or experience distress through their experience as responders. Public health agencies are critically dependent on the resilience of staff; therefore, having some redundancy in the system builds adaptive capacity to support resilience.

Communication: A strategy to deliver clear, consistent messaging across networks and the public

Communication involves multiple audiences and purposes, such as delivering information to promote public action/behaviour change, providing guidance for health care professionals, or sharing information internally with staff. Strategy is an essential part of communications planning and includes determination of the amount of information, the audience, messaging methods and content. Communication was described largely as communication out from public health agencies; however, mechanisms for gathering information and feedback also emerged.

"Communications, knowing who to call... targeting the risk communications, keeping the simple messaging that people can understand, actions they need to take. And it goes both ways. I think there's the public communications but there's also the internal for the practitioners" (Site D)

Communication supports adaptability in PHEP; as situational awareness changes, decisions must be made about how to share information with different stakeholders. Communication links with the other themes in this framework, as participants clustered it with resources and infrastructure as critical to support response capacity.

In participant discussions related to resilience of the public health system, communication became subsumed under discussions on collaboration. Discussion around communication as it relates to a resilient health system was described in terms of public engagement, and how an engaged and informed public can be more resilient. Trust built through community engagement promotes effective communication and public action.

"Internal and external communications, so communications within your organisation making sure people understand...and then that external communications out with the public." (Site E)

"If we can educate ... if we can have a good public communication system so we can get the public to participate in generating resilience. And we're going to see that it's often there that being more resilient starts." (Site C)

Communication as a specific activity represents an essential element of PHEP; however, the networks, relationships, feedback and collaborative processes that enable effective communication are part of the inherent complexity in public health, and are prominent in building resilience. Adaptability and feedback are central to communication. Feedback loops provide information about how messages are being received within and outside the system. If communication is not available or accurate, people will explore different channels to obtain information they need to perform their roles or reduce uncertainty. Informal networks provide innovative channels for communication, particularly when channels are down or ineffective.

Learning and evaluation: Evaluation as a strategy to build resilience

Learning was described by participants as adaptability during emergency response, and in preparing for future events. Learning links with other essential elements for PHEP, such as surveillance and monitoring, with a forward thinking lens.

"I think we learn from our mistakes. And I think the back-end of any good plan is to make sure that when there is an incident that there's a debrief, robust after-action or post-incident review of what was done correctly, what was done incorrectly, where could we improve and what did we learn from this... Now that helps to inform how we respond going forward." (Site F)

Developing a learning and evaluation strategy proactively, to facilitate feedback is key. Learning and evaluation enables understanding of what has worked and not worked in the past for public health emergency management; this in turn enables improved planning, recovery and response for the future. Learning longitudinally gives perspective on the system over time, rather than for just one incident.

"I think we have to look back not just on the last emergency and how well we managed that. What's our track-record in the last five years and the last ten years? And is there a kind of systemic failure, a weak point in the system still?" (Site F)

Linkages for evaluation across the PHEP framework are important. Information systems are needed to support data collection; measures to evaluate practice and experience; and processes and resources are needed to support real-time "course correction" to promote adaptability and flexibility of PHEP systems.

"And what I find really interesting is that, I think there's more and more recognition around how important that phase is, and yet even though, in my perspective, we've moved into doing something like debriefing and even doing it together in partnership, it still isn't necessarily translating itself into the next iteration of the planning. We don't actually necessarily change or act on those things that we see repeatedly." (Site A)

Despite participants' awareness of the importance of learning and evaluation, they discussed gaps in how well this element is implemented in practice. The themes of learning and evaluation and practice and experience are linked. Learning opens opportunities for positive emergence or innovation, and evaluation can enable documenting of innovations implemented during a response to inform system preparedness and revise practice. Strategies to solicit feedback or share lessons learned are important for evaluation of an event or a training exercise. Evaluation serves to document and can assist in understanding the unpredictable or disproportionate impacts or behaviours from an event that relate to non-linearity of the system, and contribute to learning for better preparedness for the next event. Sharing knowledge across systems and across jurisdictions can promote change in a broader context.

A high-level synthesis and description of the essential elements is provided in Table .

Ethics and values: Core principles guiding PHEP policy and practice

The described 11 themes represent an integration of the essential elements of PHEP with relevant ethical values and processes discussed by participants. This integration of ethics with the elements was validated through knowledge user input and ethics and values were confirmed as informing the core principles at the heart of a PHEP framework.

To summarize ethical considerations which emerged as part of the elements, the following values and processes are seen as integrated within. Values discussed important to PHEP included: equity, trust, public protection, reciprocity, duty to care, stewardship and solidarity. In addition to the values which emerged, approaches to ethical decision-making and actions for PHEP included processes such as: inclusiveness, accountability, transparency, responsiveness and reasonableness. Further details on our analysis around ethics and values will be presented in a separate paper.

Discussion

In this study, we developed an empirically-derived and theoretically-informed framework for PHEP. The framework identifies 11 essential elements of a resilient public health system and how the elements interact as a complex adaptive system. With an upstream orientation, the framework pertains to all aspects of emergency management - encompassing readiness, response and recovery - and promotion of adaptive capacity to support resilience among local/regional public health agencies. This framework addresses an important gap by contributing to the evidence base for PHEP. While overlap exists between the essential elements identified and some existing US frameworks for PHEP and emergency management [ 24, 56], our rigorous approach empirically defines a framework for a non-US context, supporting US approaches and expanding a conceptualization of PHEP with relevance to other countries with similar health systems to Canada.

In developing a visual concept to represent the framework, the essential elements for PHEP found in this study, and the complexity surrounding them, were used as a starting point. Application with practice and policy relevance was an important objective; therefore, we ensured the framework resonated with knowledge users as we proceeded through different stages of the development. Figure was developed iteratively and collaboratively with the research team and knowledge users through our iKT process.

Figure : Resilience framework for public health emergency preparedness

Moving away from technocratic visuals, the figure is influenced by an organic image, aligning with social resilience concepts [ 32]. The figure reflects the interconnectedness of the elements, overlapping at the centre as a symbolic connection in the core of the framework. The elements are depicted as part of the whole, while emphasizing the cross-cutting element of governance and leadership encircling the stand-alone elements. The representation of governance and leadership surrounding the tenets of complexity theory and the 10 other elements highlights the crucial importance of governance and leadership as a means to facilitate and manage the dynamic, complex adaptive system of PHEP.

This framework for local/regional public health agencies addresses a knowledge gap in frameworks for this level, and also aligns with global guidelines for emergency preparedness and disaster risk reduction. The Sendai Framework for DRR (2015-2030) aims to reduce disaster risk and losses in lives, livelihoods and health [ 27]. Health protection and reduction of morbidity and mortality from disasters are situated within the inter-sectoral approach of Sendai [ 57]. Our framework supports all priorities, in particular Priority 4: Enhancing disaster preparedness for effective response and to "Build Back Better" in recovery, rehabilitation and reconstruction. Preparedness is described as enabling effective response and recovery; building back better is the result of resilience in the system. By using this framework to enhance preparedness, local/public health agencies can contribute to advancing progress toward the Sendai targets and the global imperative to reduce disaster risk and impact. Specific to public health, the WHO defines emergency preparedness as: "...the knowledge and capacities and organizational systems developed by governments, response and recovery organizations, communities and individuals to effectively anticipate, respond to, and recover from the impacts of likely, imminent, emerging, or current emergencies" [ 28]. Our resilience framework for PHEP aligns with this inclusive definition of preparedness and conceptualizes an actionable definition of preparedness that is dynamic rather than static, consistent with complexity theory.

The principles of ethics and values are conceptualized as the core of the framework, underpinning all elements and the complexity. This placement reflects the central importance of ethical principles in public health practice. A scoping review conducted by members of this team identified that ethical considerations in PHEP is a knowledge gap [ 15]. In emergency planning, operational frameworks have traditionally been separate from ethical frameworks [ 28, 58, 59]. This represents a challenge when urgent operational activities and decisions in stressful situations do not implicitly take ethics into account. The values and processes found in this study resonate with other published work on public health ethics [ 34, 59]; however, the integration of ethics as part of this framework and recognizing ethical values and processes at its core is a novel contribution. One salient example of how ethics and values are integrated with PHEP relates to workforce capacity. The capacity of a workforce is about having knowledgeable and skilled staff as a starting point, but there is much more to capacity building. 'Duty to care' and the need for organizational reciprocity and transparency in supporting staff are essential for workforce capacity and represent important aspects of ethical practice [ 55]. Through this element and others we identify that the human and social aspects of the framework elements enhance resilience in the system. Resilience of staff, collaboration, community engagement, leadership and the ability to learn are social dimensions that are essential for PHEP practice and this framework incorporates yet moves beyond technical competencies and physical infrastructure to emphasize how attention to social infrastructure can promote resilience in the system.

This study has limitations which are important to consider. While this framework has an upstream orientation aimed at readiness for public health agencies throughout all phases of an emergency, it is important to acknowledge that longer term impacts of disasters may not have been fully captured [ 8]. Linkages of public health agency practice as it overlaps with mental health care and post-disaster community recovery can be explored to consider how the elements relate to long-term population health impacts of disasters. Related to study design and to the resource-intensive nature of qualitative data collection in the field and feasibility implications, we conducted six focus groups in four provinces, rather than holding focus groups in all 10 provinces and three territories in Canada. While limited in representation, the transferability of the findings to other settings is enhanced by our purposive selection of sites across diverse geographic areas of Canada and their experience with emergency events. Further, our choice of method resulted in other advantages important for iKT and building resilience. The SIM facilitates collaboration and networking [ 46]; it served to bring an opportunity for each site to build its PHEP capacity through developing relationships and common ground [ 60].

We recognize a limitation which acknowledges Canada's context related to its history of colonization of Indigenous peoples, their culture and lands. While representatives from First Nations health organizations were included through purposive sampling, we did not host focus groups in Indigenous communities. The research team acknowledges the disproportionate impact that emergencies may have on Indigenous communities due to different risk profiles. We recognize that future collaboration with Indigenous communities and health organizations is needed to ensure Indigenous voices are included in public health emergency planning. Given the complex governance implications of Indigenous health and emergency services, future work is needed to validate the developed framework in other settings and communities.

Any exploration of PHEP needs to consider complexity and look at various elements and interactions within a system. Complexity is inherent in health systems and is a useful lens for preparedness. The essential elements for PHEP for local/regional public health agencies are integrated within the system and the networked, interconnected and dynamic nature is reflected in the element descriptions. These descriptions inform health system activities, change and potentially support improvement by identifying actionable concepts for the field. This work thus integrates the current state of science in incorporating relevant theory to inform framework development. The framework identifies essential and potentially actionable elements relevant to change at the local/regional public health agency level.

A challenge emerges in moving from a definition for upstream activities to support resilience to measurement of a state of preparedness. Measurement and reporting of preparedness should provide support for ensuring preparedness but the typical 'new public management' use of measurement in health policy with a focus on benchmarking, accountabilities, and other aspects of performance management may present challenges to the use of the framework itself [ 61]. The framework stresses the interconnectedness of measures, an aspect of measurement and reporting that can be difficult to capture in tools like scorecards and report cards. Likewise, the use of this framework for evaluating preparedness and response to emergencies and disasters may be challenging as it does not support typical approaches to public health intervention evaluation and may require new approaches that stress concept mapping and a more sophisticated articulation of interconnectedness [ 44].

However, the pressure for translation of this framework or similar frameworks into measurement frameworks will likely increase. Emergencies are increasing in frequency, although may still be rare for a given jurisdiction and the culture of preparedness discussed as part of governance and leadership may vary in terms of establishment across public health agencies. Emergencies create public concern and often become political. Public attention on risks and impacts of emergencies can lead to significant investment in emergency management, as was seen in the last few decades in North America. In the absence of an emergency to generate political and public attention, challenges remain in organizational accountability to politicians, decision-makers and the public on the state of an agency's preparedness, and to justify investment in preparedness. Although this study addresses a definition of readiness relevant to local/regional public health agencies in Canada and for other relevant health systems, careful consideration of how it can link to different approaches to measurement and management of the concepts represented by the framework elements may be useful to enhance practice, guide improvement and support accountability. Our future work will address these challenges.

Conclusions

In summary, we present a conceptual framework of the essential elements for a resilient PHEP system, aimed at identifying upstream actions to promote readiness for disasters and emergencies. Our analysis describes the complexity of the system yet moves beyond description to using tenets of complexity to define a framework focused on resilience, for practice and policy action. This applied public health framework for local/regional public health agencies forms an evidentiary basis for PHEP and DRR which will be further augmented by developing key indicators.

Additional files

Acknowledgements

The authors would like to acknowledge the following individuals for their support of study implementation and data management: Prof. Alison Thompson, Sarah Nayani, Wayne Corneil, Emily Guy, Vanessa Bournival, Lyric Oblin-Moses, Camille Mageau, and Claude Martel. We would like to acknowledge Sara Lacarte for her contributions to manuscript preparation.

We would also like to acknowledge our knowledge user team for their contributions to study implementation and their support of the research: Dr. Frank Atherton, Jill Courtemanche, Dr. Eileen de Villa; Jean-Francois Duperré; Dr. Victoria Lee; Dr. Mark Lysyshyn; Dr. Sue Pollock; Clint Shingler; Russell Stuart; Dr. Theresa Tam and Dr. David Williams. We also wish to thank our international collaborators for their support of the research: Drs. Daniel Barnett, Jamil Bayram, Kirsty Challen, David Etkin, Daniel Kollek, Laurie Mazurik, Andrew Lee and Brenda Phillips.

Abbreviations

Authors' contributions

YK was the Nominated Principal Investigator for the study and led study design, implementation, data collection and analysis. TO was the methodological lead for the study and played a key role in study design, implementation, data collection and analysis. BS was the co-principal investigator and contributed to study design and data analysis. ST contributed to implementation, data collection, analysis and development of the framework visual. AB, JG, MG, BH contributed to study design and data analysis. YK and TO drafted the manuscript. All authors contributed to manuscript revisions. All authors approved the final manuscript.

Notes

Ethics approval and consent to participate

Research ethics approval was obtained from the Ethics Review Board at Public Health Ontario (project ID: 2015.080) and the Research Ethics Board and the University of Ottawa (REB #H02-16-16). A signed declaration of consent to participate was obtained from all research participants prior to data collection.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests with respect to this research.

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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References

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Public health emergency preparedness: a framework to promote resilience

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Yasmin Khan, 1, 2, 3 Tracey O'Sullivan, 4 Adalsteinn Brown, 5 Shannon Tracey, 1 Jennifer Gibson, 5, 6 Mélissa Généreux, 7, 8 Bonnie Henry, 9 and Brian Schwartz 1, 5 Keywords: Public health, Emergency preparedness, Emergency management, Disasters, Disaster risk reduction, Resilience, Qualitative research, Complexity theory Emergencies and disasters impact population health, as we face diverse hazards influenced by complexities in our environment, demographics and social constructs.

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Applying Knowledge to Health Disaster Planning and Preparation

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Applying Knowledge to Health Disaster Planning and Preparation

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Mikaila Kissel and Jamie Lafond

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The Surveillance, Informatics and Epidemiology Triangle

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The Surveillance, Informatics and Epidemiology Triangle

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By Linda R. Greene, RN, MPS, CIC

The last decade has brought unprecedented changes in healthcare delivery. Although there has been continued development of new devices, drugs and techniques, the major change for those in infection prevention and epidemiology is to identify, manage and use clinical data to provide important information leading to early recognition of disease including prevalence and risk factors for infections, in and across multiple healthcare settings. The potential for more rapid identification and dissemination of important information extends from public health to the individual organization level.(1)

Advances in health information technology (HIT) will continue to affect all areas of healthcare from administration to clinicians and front line staff. These advances have been spurred by the enactment of The American Recovery and Reinvestment Act of 2009. This act identified three main components of what is referred to as "meaningful use." These include the use of a certified electronic health record in a meaningful manner, the electronic exchange of healthcare information, and the use of technology to submit quality and other important information. Recommendations for stage 3 of this process include a focus on tools to measure and improve outcomes.(2)

From an infection prevention perspective, requirements for public reporting of healthcare-associated infections (HAIs), increased focus of infection prevention efforts across the continuum of care, and rapid advances in information technology have provided new opportunities for strengthening epidemiology and surveillance activities. As changes in surveillance definitions have evolved, so have the methods of surveillance, spurred by rapid advances in information technology. For example, the widespread adoption and improvements in the electronic health record (EHR) offers unparalleled opportunities to improve surveillance and epidemiology.

By definition, health informatics is a multidisciplinary field that uses HIT to improve health care by combining higher quality, higher efficiency and new opportunities. It deals with the resources, devices and methods required to optimize the acquisition, storage, retrieval and use of information in healthcare. Health informatics tools include computers, clinical guidelines, formal medical terminologies and information and communication systems.(3)

Surveillance is a core function of public health agencies that requires timely, accurate and complete data. Electronic records offer an opportunity to improve links between healthcare providers and public health departments, making surveillance more effective and timely. Advances in health information technologies, including the EHR systems, electronic laboratory reporting (ELR) and health information exchange (HIE), have provided public health departments with information systems and networks to automate disease reporting and surveillance. Historically, public health agencies have relied on physicians and infection preventionists (IPs) to manually report notifiable diseases following diagnosis, usually from a confirmatory laboratory test result. HIE is the electronic transfer of clinical and administrative information across diverse and often competing healthcare organizations Several studies in public health informatics have successfully demonstrated that less manual, more automated approaches like ELR, which utilize EHR systems and HIE networks, can improve the completeness and timeliness of notifiable disease surveillance efforts.(4)

The evolving field of surveillance informatics presents both challenges and opportunities. The challenges include finding efficient and effective ways of combining multiple sources of complex data and information into meaningful and actionable knowledge (e.g., for situational awareness). As these challenges are met, opportunities will arise for faster, better and lower cost surveillance and interpretation of health events and trends.

HAIs and antimicrobial resistance are major problems in U.S. healthcare institutions. Surveillance is a critical component of prevention efforts. At the organizational level, HAI surveillance will involve the capture and use of data in existing electronic databases. These data can be used to enhance case findings, populate fields in data entry screens, detect and calculate rates of certain events and detect clusters and outbreaks. EHRs and clinical decision support systems (CDSSs) have the potential to enhance antimicrobial stewardship. These systems enable clinicians and antimicrobial stewardship programs (ASPs) to more efficiently review pharmacy, microbiology and clinical data. With the increased emphasis on antimicrobial stewardship, the ability to link antimicrobial use patterns, microbiology reports and pharmacy records cannot be understated. In addition, CDSS tools can be utilized to perform prospective audit and feedback.(5)

As such electronic systems become more advanced and robust; there are limitless opportunities for infection prevention. Currently EHRs can provide important information regarding care processes and implementation of evidence based practices. These process measures enhance the ability to interpret findings from outcome-based surveillance and lead naturally to focused prevention efforts.

One logical next step is to leverage the electronic health record to identify key risk factors for the development of certain infections in individual patients, thereby identifying patients at risk and pre-emptively implementing preventive strategies. Infection surveillance will certainly undergo dramatic changes over the next few years as it transitions from a paper or partially automated system to a fully automated system. With these changes will come both opportunities and challenges. Each organization's infection control program is unique based upon the demographics of the patient population and scope of services provided, but the expectation is that each is based on sound epidemiologic principles.

Given the pace of change, it is essential that informatics principles be widely understood if IPs are to develop the capacity to manage and utilize information systems to address HAIs and other adverse events. As technology leads to changes in surveillance and data reporting, IPs can focus their efforts towards data analysis, education, collaboration and implementation of evidence based interventions. As the field of healthcare informatics continues to evolve, the IP should be involved in adoption efforts at local, regional, and national levels to leverage the opportunities created by current health IT initiatives.(6) This will ensure that IPs are engaged in leveraging technology and helping to create the roadmap for tomorrow.
Linda R. Greene, RN, MPS, CIC, is manager of infection prevention at Highland Hospital, an affiliate of the University of Rochester Medical Center.
References:
1. van Mourik MS et.al. Automated surveillance for healthcare-associated infections: opportunities for improvement Clin Infect Dis July 2013;57;1: 85-93.
2. http://www.hrsa.gov/healthit/meaningfuluse/stage1clinicalquality/whatis.html/. Retrieved Oct.16, 2015
3. http://www.cdc.gov/mmwr/preview/mmwrhtml/su6103a5.htm/. Retrieved Oct.14, 2015
4. http://www.cdc.gov/ehrmeaningfuluse/index.html/. Retrieved Oct.19, 2015
5. Forrest G, et.al. Use of Electronic Health Records and Clinical Decision Support Systems for Antimicrobial Stewardship CID 2014:59 (Supp3): S122- S133
6. Atreja A, et.al. Opportunities and challenges in utilizing electronic health records for infection surveillance, prevention, and control AJIC; 36; 3: S37- S46

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The Surveillance, Informatics and Epidemiology Triangle

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The last decade has brought unprecedented changes in healthcare delivery. Although there has been continued development of new devices, drugs and techniques, the major change for those in infection prevention and epidemiology is to identify, manage and use clinical data to provide important information leading to early recognition of disease including prevalence and risk factors for infections, in and across multiple healthcare settings.

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The Role of Biostatistics and Informatics in Public Health

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The Role of Biostatistics and Informatics in Public Health

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We are deluged with information and statistics via clinical trials, observational and longitudinal studies, and genomics at any given moment. But it's what we choose to do with this information that makes it valuable in the realm of public health, which is why biostatisticians and similar professionals skilled in the art of biostatistics and informatics are in such high demand.

Both biostatistics and informatics involve translating data into meaningful information that can then be used to make logical and beneficial public health decisions.
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What is Biostatistics?

Biostatistics is the branch of statistics responsible for interpreting the scientific data that is generated in the health sciences, including the public health sphere. It is the responsibility of biostatisticians and other experts to consider the variables in subjects (in public health, subjects are usually patients, communities, or populations), to understand them, and to make sense of different sources of variation.

In essence, the goal of biostatistics is to disentangle the data received and make valid inferences that can be used to solve problems in public health. Biostatistics uses the application of statistical methods to conduct research in the areas of biology, public health, and medicine. Many times, experts in biostatistics collaborate with other scientists and researchers.

Biostatistics has made major contributions to our understanding of countless public health issues, such as:

Chronic diseases

Cancer

Human growth and development

The relationship between genetics and the environment

AIDS

Environmental health (the impact and monitoring of)

Biostatistics is integral to the advancement of knowledge, not only in public health policy, but also in biology, health policy, clinical medicine, health economics, genomics, proteomics, and a number of other disciplines.
The Role of Biostatisticians
Biostatisticians are said to be the specialists of data evaluation, as it is their expertise that allows them to take complex, mathematical findings of clinical trials and research-related data and translate them into valuable information that is used to make public health decisions. The work of biostatisticians is also required in government agencies and legislative offices, where research is often used to influence change at the policy-making level.

In short, these professionals use mathematics to enhance science and bridge the gap between theory and practice.

Biostatisticians are required to develop statistical methods for clinical trials, observational studies, longitudinal studies, and genomics:

Clinical trials: Studying the evaluation of treatments, screening, and prevention methods in populations

Epidemiological: Studying the causes and origins of disease in humans

Human Genetics: Studying the genetic differences associated with diseases and disease states

Genomics: Studying the biological activity of genes as they relate to diseases and treatments

Spatial Studies: Studying the geographical distribution of disease/risk factors

Although the work of these scientists is complex, their responsibilities include:

Designing and conducting experiments related to health, emergency management, and safety

Collecting and analyzing data to improve current public health programs and identify problems and solutions in the public health sector

Interpreting the results of their findings

The validity of their research results depends on how well they can make meaningful generalizations and how well they can reproduce and apply experimental methods.

What is Informatics?

Informatics, which is actually an emerging field, is also known as bioinformatics, a science that relies on the basic disciplines of science, mathematics, probability and statistics, and computer science to build a solid statistical foundation for making advances, improvements, and even breakthroughs in public health and medicine.

Health informatics is often said to meet at the intersection of information science, computer science, and healthcare, as it deals with the resources, devices, and methods required for the effective storage, use, and retrieval of information, while public health informatics includes the application of informatics in public health areas, such as surveillance, prevention, preparedness, and health promotion. Public health informatics focuses on information and technology issues from the perspective of groups of individuals.

Naturally, health informatics tools would include computers, making systems analysts important members of public health informatics research teams. It is the responsibility of expert informaticists to systematically apply information, computer science, and technology into research, learning, and the practice of public health.
The Role of Systems Analysts in Informatics
Systems analysts are called upon to write and troubleshoot the software used by biostatisticians and researchers. Their work may also include conducting their own research, designing databases, and developing algorithms for processing and analyzing information.

The main responsibilities of systems analysts in biostatistics and informatics include:

Incorporating bioinformatics/biostatistics into efficient and automated data analysis tools

Developing and tracking quality workflow metrics for detecting variants and sequences

Working with scientists and researchers to develop project plans

Specializing the Master of Public Health (MPH) in Biostatistics and Informatics

Biostatisticians often complete their undergraduate degree in math or biology, while systems analysts often complete their undergraduate studies in a computer science program that is focused on bioinformatics and scientific computing.

Because a master's degree is the minimum requirement in many clinical, academic, and governmental research positions, many professionals in biostatistics and informatics choose to pursue graduate work through the completion of a Master of Public Health (MPH) degree.

The Master of Public Health (MPH) has long been the gold standard for professionals in the public health sector, as many public health schools offer MPH specializations in biostatistics and/or informatics.

MPH programs are typically broken down by:

Public health courses, which include the major disciplines of the field, including:

Community health sciences

Environmental and occupational health sciences

Epidemiology

Biostatistics

Principles of public health management

Courses in the MPH specialty

A field practicum: Often includes working with an approved organization or agency

A capstone project

Master of Public Health in Informatics
The MPH in Informatics teaches students how to design, develop, and manage public health information systems.

An MPH in Informatics prepares students by providing them with:

The principles of public health and public health informatics

The definitions and standards of health data

Structure and uses of public health databases and networks

Applications of the basic functions and operations of public health information technologies

Strategies for developing or adapting pubic health-related information systems

Planning and managing objectives and standards for public health information systems projects

The uses of public health informatics applications, public geographic information systems, and data mining

Some of the courses taken in an MPH in Informatics program include:

Health information and decision support systems

Development of public health surveillance information systems

Legal and ethical issues in public health informatics

Public health information systems evaluation and project management

Web-based public health information systems

Geographic information systems applications in public health

Data mining applications in public health

Master of Public Health in Biostatistics

A Master of Public Health in Biostatistics is designed for students who want to focus their graduate work on biostatistics and analysis. Students in this MPH graduate program are exposed to a variety of statistical methods and their applications in public health. Coursework and the subsequent capstone project are typically focused on designing, collecting, managing, analyzing, interpreting, and presenting data.

Graduates of an MPH in Biostatistics program are prepared to:

Specify and produce valid study designs

Perform database management and produce working tables and statistical summaries

Analyze data in terms of stated hypotheses

Generate new hypotheses

Properly interpret study results

Coursework in an MPH in Biostatistics includes:

Applied biostatistics

Database design and management

Statistical consulting

Applied survival and longitudinal analysis

Design of clinical trials

Analytical epidemiology

Statistical theory

Research methods in epidemiology

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Biostatisticians and Informaticists in Public Health | MPH in Biostatistics and Informatics

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We are deluged with information and statistics via clinical trials, observational and longitudinal studies, and genomics at any given moment. But it's what we choose to do with this information that makes it valuable in the realm of public health, which is why biostatisticians and similar professionals skilled in the art of biostatistics and informatics are in such high demand.

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The Public Health System & the 10 Essential Public Health Services

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The Public Health System & the 10 Essential Public Health Services

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The 10 Essential Public Health Services (EPHS) describe the public health activities that all communities should undertake. For the past 25 years, the EPHS have served as a well-recognized framework for carrying out the mission of public health. The EPHS framework was originally released in 1994 and more recently updated in 2020. The revised version is intended to bring the framework in line with current and future public health practice.

The revised EPHS framework was released on September 9, 2020, as a result of a collaborative effort by the Public Health National Center for Innovations (PHNCI) and the de Beaumont Foundation, who convened a task force of public health experts, leaders, and practitioners and engaged the public health community in activities to inform the changes. The task force also included experts from federal agencies, including CDC, which were instrumental in establishing and supporting the original EPHS framework. Details about the process to update the EPHS can be found on the PHNCI website, along with accompanying materials.

Essential Public Health Services (Revised, 2020)

The 10 Essential Public Health Services provide a framework for public health to protect and promote the health of all people in all communities. To achieve equity, the Essential Public Health Services actively promote policies, systems, and overall community conditions that enable optimal health for all and seek to remove systemic and structural barriers that have resulted in health inequities. Such barriers include poverty, racism, gender discrimination, ableism, and other forms of oppression. Everyone should have a fair and just opportunity to achieve optimal health and well-being.

1. Assess and monitor population health status, factors that influence health, and community needs and assets

2. Investigate, diagnose, and address health problems and hazards affecting the population

3. Communicate effectively to inform and educate people about health, factors that influence it, and how to improve it

4. Strengthen, support, and mobilize communities and partnerships to improve health

5. Create, champion, and implement policies, plans, and laws that impact health

6. Utilize legal and regulatory actions designed to improve and protect the public's health

7. Assure an effective system that enables equitable access to the individual services and care needed to be healthy

8. Build and support a diverse and skilled public health workforce

9. Improve and innovate public health functions through ongoing evaluation, research, and continuous quality improvement

10. Build and maintain a strong organizational infrastructure for public health

EPHS Launch Event

On September 9, 2020, the de Beaumont Foundation and Public Health National Center for Innovations hosted a virtual launch for the revised 10 Essential Public Health Services. View the complete launch event recording below. Listen to remarks from José T. Montero, MD, MHCDS, then-Director of CDC's former Center for State, Tribal, Local, and Territorial Support (now the National Center for State, Tribal, Local, and Territorial Public Health Infrastructure and Workforce).

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The 10 Essential Public Health Services provide a framework to protect and promote the health of all people in all communities.

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How They Relate to the 10 Essential Services

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How They Relate to the 10 Essential Services

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national center for environmental health

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CDC's Environmental Health Services Branch provides resources on preventing foodborne illnesses and outbreaks, keeping water safe, and improving the performance of environmental health service programs.

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Building a Foundation of Knowledge to Prioritize Community Needs

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Building a Foundation of Knowledge to Prioritize Community Needs

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Solving problems and making optimal decisions in healthcare is heavily dependent on access to knowledge. In today's increasingly complex environment, it is rapidly becoming essential for healthcare organizations to effectively manage both internal knowledge and externally generated knowledge in order to provide the best possible healthcare, achieve operational excellence, and foster innovation. A well-organized and effective strategy for knowledge management in healthcare can help organizations achieve these goals.

Established as a discipline in 1991, knowledge management is generally defined as the process of capturing, developing, sharing, and effectively using knowledge. Knowledge management efforts typically focus on strategic objectives such as improved performance, competitive advantage, innovation, the sharing of lessons learned, integration, and continuous improvement.

In other industries, large organizations, public institutions, and non-profit organizations have resources dedicated to internal knowledge management efforts. However, few healthcare organizations have a knowledge management strategy or an intentional approach to supporting the knowledge management process. This is beginning to change.

Three Reasons Why Knowledge Management Is Important

There are three key reasons why actively managing knowledge is important to success.

It facilitates decision-making capabilities. When people in an organization experience information overload or lack the knowledge needed for decision-making, clinicians and managers can be handicapped. Putting knowledge management systems in place can facilitate the flow of information and result in better, more-informed decisions.

It builds learning organizations by making learning routine. In his book, Learning in Action: A Guide to Putting the Learning Organization to Work, David Garvin noted, "to move ahead, one must often first look behind." This implies the need to create a data-driven continuous-learning environment that supports organizational learning based on experience. In his well-known book The Fifth Discipline: The Art and Practice of the Learning Organization, Peter Senge describes a learning organization as an organization "where people continually expand their capacity to create the results they truly desire, where new and expansive patterns of thinking are nurtured, where collective aspiration is set free, and where people are continually learning to see the whole together." Organizational research over the past two decades has revealed three broad factors that are essential for organizational learning and adaptability: a supportive learning environment, concrete learning processes and practices, and leadership behavior that provides reinforcement.The characteristics of a learning organization are shown in the diagram. We can all continuously assess our successes and our failures as we strive to continuously improve. This creates a culture that learns from experience based on a data-driven assessment of performance and outcomes. Learning from experience builds knowledge that can then be used to improve care and streamline operations over time.

Finally, knowledge management stimulates cultural change and innovation. Actively managing knowledge encourages the free flow of ideas and an innovative culture. An innovative culture begins with accepting that the world really is changing and being open to doing things differently. It starts with the right mindset. The unexpected must be expected. This mindset must be fostered by leadership at the top of the organization and ultimately needs to permeate every level of the organization. It must become part of the beliefs, expectations, and purpose throughout an organization. In the increasingly complex healthcare environment, an effective knowledge management program can help clinicians and operational managers embrace change and encourage the ideas and insights that often lead to innovation.

Using IT Systems to Enable Knowledge Management in Healthcare

In a report published in 2012 entitled " Enabling Health Care Decision-making Through Clinical Decision Support and Knowledge Management," the Agency for Healthcare Research and Quality (AHRQ) cited strong evidence that clinical decision support systems and knowledge management IT systems can be effective in improving health care process measures across diverse settings using both commercially and locally developed systems. It is likely that these systems will become a key part of the IT infrastructure of all healthcare organizations over the next few years.

With the widespread adoption of EHRs, the availability of advanced analytical tools, and an emphasis on value production, data-driven healthcare will dominate the next decade. As this transformation unfolds, the effective management of knowledge will become an essential skill that all healthcare providers will need to master.

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Knowledge Management in Healthcare: It's More Important Than You Realize

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Solving problems and making optimal decisions in healthcare is heavily dependent on access to knowledge. In today's increasingly complex environment, it is rapidly becoming essential for healthcare organizations to effectively manage both internal knowledge and externally generated knowledge in order to provide the best possible healthcare, achieve operational excellence, and foster innovation.

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Developing Informatics Tools and Strategies for Consumer-centered Health Communication

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Developing Informatics Tools and Strategies for Consumer-centered Health Communication

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Introduction

Consumer health information resources provide health information to lay users, hopefully to empower patients, caregivers, families, and consumers; improve decisions; and ultimately foster better public health outcomes. Although the number of consumer-oriented resources keeps growing, their effective use requires significant lay knowledge and skills in areas ranging from health terminology knowledge to effective use of electronic media. Competency deficiencies among those who most require such capabilities result in a digital divide, or a growing gap between persons who can and cannot benefit from the proliferation of online health information. The field of consumer health informatics has the potential to assist developers with tailoring resources to consumers, which reduces gaps between the knowledge and skills required by the resource and possessed by its users. The goals of this article are: (1) to review existing theory and informatics tools in the field of consumer E-health communication, and (2) to identify existing challenges and make recommendations for further research agenda. The approaches discussed in this article include, but are not limited to: work on the development of consumer health vocabularies, implementation of tools for information retrieval and readability support, integration of user needs and usability concerns into the design of consumer health information resources, and assessment of users' health literacy as well as the quality of information resources. Although health information can be delivered to consumers via a variety of media types (e.g., audio and video programs, podcasts, CD-ROMs), the usage of "consumer health informatics" throughout this article primarily refers to the provision of health information resources to consumers via the Internet.

The article is divided into four sections. Section one discusses the theory and trends in digital health communication. It includes an introduction to the conceptual dimensions that influence informatics health intervention and outlines a variety of consumer E-health applications in public health, the health care delivery system, and patient care. Section two reviews barriers to designing effective resources for communicating with health consumers. These barriers include issues of access and user competencies, as well as designers' limited insight into users' information needs. Section three reviews selected informatics research on tools and strategies to overcome health communication barriers, including developing improved consumer health vocabularies, optimizing information retrieval and readability, evaluating information quality, incorporating user needs plus usability concerns into systems' design, and assessing users' health literacy. Section four, which is the conclusion, provides broader challenge and recommendations for future research.

This article originated from a round-table discussion during the 2007 AMIA Spring congress, when over 30 attendees with an interest in consumer health informatics expressed their views on the current state and research priorities of the field. The transcript of the discussion was instrumental in defining the topics covered in this manuscript. The manuscript was then reviewed and adopted by AMIA's Consumer Health Informatics Working Group, and endorsed by the AMIA Working Group Steering Committee on January 28, 2008. This article is intended to raise intraprofessional awareness, outline research priorities, and advance scholarly outreach and leadership. It does not provide a comprehensive literature review.

Theory and Trends

Conceptual Dimensions of Consumer Health Informatics

Logan and Tse recently combined the conceptual history of health campaign and information-seeking process (ISP) research into an integrated conceptual framework of consumer health informatics and health communication to the public. This conceptual framework attempts to bridge the conceptual gaps between health campaign, health communication, and consumer health informatics research. The conceptual framework integrates the ISP, which is a dynamic, iterative series of cognitive processes, with four additional dimensions advanced by the health campaign research literature.

The first dimension includes consideration of: (1) the source of health messages, (2) the content of health messages, (3) the media delivery channel of health messages, (4) the receiver's (individual) postexposure to health messages, and (5) the destination of health messages. Within this dimension, the focus on the content of health messages conceptually includes issues such as the ability of the content to match the target audience's written, visual, or media literacy. The focus on the receiver partially conceptually encompasses individual characteristics of health information seeking and includes the convergence of a person's prior interest in health, some cognitive skills, and access to information, which often are addressed in traditional consumer health informatics research. Logan and Tse note a core difference between traditions in health information seeking and health campaign research: the latter field consistently asserts that personal health information seeking and the match between a person's cognitive skills and content are just two elements within a broader environment in which a person is exposed and responds to health information.

Within this broader environment, the second dimension includes a consumer's environmental and affective context (e.g., emotions, feelings, instincts, broad non-information seeking interests, and motivations); the possibility of multidimensional, situation-based responses; and the probability that health information seeking and media use reflect both cognitive "uses" (such as information gain) as well as emotional "gratifications." The third dimension includes: (1) assessing a consumer's immediate social influences, social milieu, and behavioral adaptability, such as the influences of peer pressure, community influences, and commercial advertising on health information seeking and behaviors; (2) a more sophisticated understanding of individual cognitive behavioral factors, such as a person's problem solving and decision-making skills, and (3) the degree a consumer's commitment to a specific health behavior is matched by other relevant skills or abilities to successfully adapt a health or medical intervention, including health status. All three dimensions reflect an important research-derived understanding that a consumer's affective response, setting, lifestyle, and skills are as integral as cognitions (e.g., prior knowledge and information seeking habits) and health status to conceptually frame the dynamics of how persons seek health information.

A fourth dimension emphasizes macro forces, such as a nation's or region's health resources, its global or national context (e.g., developing versus industrialized, cultural, and religious heritage) its economic prosperity and geopolitical factors.

The linking of traditions in information science and health campaign research provides: (1) an integrated multidimensional conceptual framework, and (2) a convenient launching point for multidisciplinary efforts to better assess, explain, and model consumer motivations to seek, retain, and relish health information resources on the Internet. The integrated framework strongly suggests that a consumer's information-seeking process is impacted by affective, community, sociological, demographic, and individual skills, macro and micro cultural realities, as well as the possibility that the purpose of seeking health information and using health resources on the Internet is not always to gain information. The integrated framework also suggests that the process of health communication is horizontal and multidirectional. Many of the conceptual dimensions and issues outlined here are discussed throughout the article.

New Trends in Health Communication and the Emergence of E-Health

Health communication via electronic media has roots in more traditional media. Books, encyclopedias, and take-home patient brochures were among the first available mass media to share health information. Mass-printed media, such as newspapers and magazines, and television also have been used to deliver information. However, the power and popularity of the Internet significantly increased the types of available media resources, changed the mechanics and economics of the mass delivery of health information, the potential for increased consumer access to health information, and the modalities by which persons seek health information.

Three groups participate actively in the E-health information exchange: health care providers (clinical and other), patients and their immediate caregivers, and others, including healthy persons who wish to stay well. The Internet has provided numerous opportunities for health care professionals to interact with their patients and with each other. For example, telemedicine has made it possible to diagnose from a geographically different place and time, e-mail is used to provide advice, and pharmacies encourage electronic request for refilling of medication. Health care professionals also can consult each other using listservs or in online communities of practice. In a study of an advanced practice nurses' listserv, Hara and Hew found the majority of activity (more than 80%) consisted of knowledge sharing or information solicitation. Finally, health care professionals together with hospitals, insurance companies, nonprofit and for-profit health care organizations/institutions and the news media, provide health information via websites, electronic newsletters, or e-mail.

Patients and others can educate themselves by reading about general disease and health information, such as provided by WebMD.com or MedlinePlus.gov, clinical trials information, such as provided on ClinicalTrials.gov, and product information (evidence-based or not), such as provided on pharmaceutical advertisements or drug labels. The Internet and the increased availability of technology also encourage a more active partnership between health care professionals and patients plus caregivers. Although many of these efforts are in trial phases, professionals and patients can use software products to help manage chronic diseases and conditions. For example, blood glucose meters can be combined with software to visualize glucose levels before and after meals for extended periods of time. Body mass index calculators are often available as a free download, or on highly accessible, free websites. Patient-accessible electronic health records are sometimes sponsored by hospitals, in addition to their electronic medical records, or they are initiated by individual consumers. Family health record keeping systems are available through Internet resources, such as the U.S. Surgeon General's Office. These sources of patient input collect additional, and often missing, information that is important in clinical decision making. Wuerdeman et al. found consumer-generated data is reasonably accurate when consumers characterize the overall findings of medical tests, but self-reports are less reliable for precise measures, such as a blood pressure measurement.

Barriers to Effective Consumer E-Health Communication

Access, Competencies, and Digital Divide Issues

The opportunities afforded by E-health are not equitably available to everyone. Because E-health's inception, researchers, policy makers, and consumer health information product developers have been concerned about outreach to medically underserved audiences and the link between health disparities and Internet access. Ratzan and Parker find those who most need health information lack the means, knowledge, and skills necessary to benefit from Internet health resources.

Although the access gap may be narrowing, health literacy has emerged as a more fundamental barrier to providing Internet and other health resources to medically underserved and other audiences. Health literacy also is now perceived as a primary obstacle to reducing health disparities. Health literacy is "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." It is useful to think of health literacy in terms of the core competencies required to retrieve and process various kinds of consumer heath information online. A number of conceptual models and frameworks identify somewhat different but largely overlapping sets of instrumental skills. These include general literacy skills (reading ability, oral and written communication), numeracy skills (estimation, computation, understanding probabilities), conceptual knowledge, health vocabulary knowledge, document literacy (understanding format and function of specific health-related forms), technological fluency (ability to manage information technology devices), and information seeking skills and rhetorical skills (advocacy, making requests and complaints). An individual's propensity to exercise health literacy skills is related to perceived cognitive abilities, health/physiological status, mass media familiarity, perceived self-efficacy, as well as social and cultural norms (similar to the conceptual overview discussed in the first section).

Further, about 50% of U.S. adults do not possess adequate health literacy skills required for many health communication and management tasks. Similar to Internet access, health literacy skills are disproportionately low among economically disadvantaged people, seniors, and ethnic minorities Problems with understanding health information can often be related to inadequate general literacy skills. For example, 43% of U.S. adults have difficulty with moderately challenging prose literacy activities, such as drawing on two separate statements in a text to make an inference. To address this problem, many guidelines recommend writing consumer health materials at the 6 th to 8 th grade level, as measured by existing general readability formulas. Actual readability of material varies, but most assessments report that at least 50% (typically, more) of the reviewed materials were written above the 8th grade level. In addition, health understanding also can be difficult even for persons with higher-than-average English or other language proficiencies. The Institute of Medicine found that above-average language skills are not necessarily associated with the public's functional understanding of health messages, or medical information. The Institute of Medicine added that health education and literacy are not necessarily addressed by the same strategies used to bolster general education and language skills. Hence, improving health literacy is more challenging than general literacy and successful public communication strategies are not necessarily predicted by audience demographics or educational backgrounds.

Recent evidence suggests that inadequate health literacy negatively impacts health behaviors (e.g., medication adherence and compliance with physician instructions) and broader clinical outcomes. Although the field of consumer health informatics cannot remedy all the challenges raised by health literacy, it can reduce the gap between user health literacy and consumer E-health resource health literacy requirement. This can be accomplished by providing ways to assess or estimate users' health literacy and appropriately tailor the presentation of health information.

Limited Understanding of the Public's Health Information Needs

Paradoxically, there is voluminous literature on the information needs of health care professionals but very little on those of patients and little about the needs of the general public. In practice, systems design is typically guided by the providers' perception of patients' information needs, rather than by actual needs assessment.

Five Other Consumer E-Health Communication Barriers

Besides the systematic obstacles outlined above, there are at least five other operant barriers in consumer health informatics research that seeks to optimize how health information resources are provided to the public, patients, and providers. First, although informatics has demonstrated potential to improve health communication to the public, the field faces challenges similar to those faced by health communication researchers, such as a need to serve diverse demographic and psychographic audiences within a variety of communication contexts. Because health care consumers are a heterogeneous group with varied cultural, educational, and social backgrounds (who engage in horizontal, multidirectional health communication within an array of contexts), the resulting diversity makes it difficult to develop general informatics solutions.

Also, although groups of clinicians and scientists using a professional resource typically share similar education backgrounds and often handle similar tasks (e.g., a literature search on a well-defined topic), for patients and caregivers, there is little training and predictability in information-seeking patterns. Although a consumer health website can use a built-in health literacy assessment tool to match the user to a desired readability level, optimal information presentation sometimes depends on the English fluency of the recipients, other health literacy competencies (such as a user's health information seeking proclivities), as well as a host of interactive factors that include user motivation, prior knowledge of the specific topic, and the context (e.g., the diagnosis, emotional state). Overall, the multidimensional nature of a consumer or an audience's converging on health information resources, which was outlined in the article's first subsection, poses a significant challenge in developing tailored consumer E-health resources on the Internet.

The complexity of communicated information presents a second challenge. For example, many consumer-generated, straightforward health questions, such as "Does hormone replacement therapy cause cancer," lack a simple answer. To comprehensively respond, one might discuss increased and decreased risks for different types of cancers, absolute versus relative risks, personal versus population-level risk prediction, and different types of hormone replacement therapies. In other words, adding a context to increase understanding can be detrimental to its comprehension by some health information consumers.

Third, some routine lay communication scenarios, such as informed consent, present externally imposed barriers that challenge researchers, providers, patients, caregivers and communicators who seek to make health information understandable. Informed consent forms serve a dual purpose: although the primary purpose is to help potential participants in clinical trials to make informed decisions, the secondary one is to limit liability. Yet, it is difficult to simultaneously simplify content and provide an effective legal defense. In this common example, the best of intentions to make language understandable may be eclipsed by external requirements, which can divert attention from a user focus, or result in more attention to the format in which information is presented instead of its content. While content might follow function in informed consent, the overriding issue in health communication creates scenarios where a range of optimal communication options may be unavailable.

Fourth, because communication is a horizontal, multidirectional process, the complexity of the information provided by consumers certainly must be taken into consideration. Patients' accounts of their health history may involve intricate narrations, concerns, and reasoning patterns. Whereas historically such information was often not well documented, the new emphasis on shared record keeping increases a need to devise accurate and efficient ways to represent and integrate patient-generated information.

Fifth, besides providing understandable information, measuring the clinical and cost-effective impact of health communication may be problematic in consumer health informatics research. In traditional mass media-based health campaigns, information is typically provided to either promote or discourage a behavior. Such behavior changes (e.g., smoking cessation) can then be measured as the outcome of the campaigns. However, consumer health informatics applications, such as information retrieval and decision support tools, often do not directly target immediate, measurable behavioral changes. Although consumer informatics researchers assume that well-informed patients make better self-care decisions and in the long run have better health, the inability to focus on a specific behavior undermines the demonstration of a specific, therapeutic, health-related outcome. While a higher level of patient satisfaction (e.g., a patient feels more confident about the decision to undergo a procedure) represents a positive outcome, informaticians should think about improving the accountability and outcome measures in consumer health informatics initiatives.

Although all five aforementioned challenges are common in consumer health informatics research, the point is for researchers to remain mindful of them in study design and execution. The ability to address each challenge is an opportunity to advance how informatics provides health information to intended audiences and advances communication among them.

Informatics Tools and Strategies to Eliminate Health Communication Barriers

Developing Consumer Health Vocabularies

As previously mentioned, a significant element of the multidirectional E-health communication between consumers and providers is text-based, and vocabulary is an essential component of all textual messages. Education materials, medication labels, informed consent forms, personal health records, patient e-mails, news group postings, and Web queries all require adequate vocabulary knowledge for both machine processing and human understanding. This raises two issues: first, many consumers have difficulty comprehending medical jargon. Second, computer systems may not recognize lay health terms if they are not included in a controlled vocabulary such as Unified Medical Language System (UMLS).

Health communication researchers have partially explored the lay-professional vocabulary barrier. More health education for consumers and increased communication education for providers are two potential solutions, but both will take decades and a massive investment in adult, child, adolescent, and professional education to accomplish. In the interim, the authors believe informatics can and should provide much-needed assistance (although it will not provide a total solution) to both health consumers and providers.

To address the critical need of vocabulary support for consumer health application, both for-profit and nonprofit organizations have developed consumer health vocabulary (CHV) products. Three commercial entities (Intelligent Medical Objects, Apelon, and WebMD) created CHV and/or CHV tools between the late 1990s and early 2000s. The content of the Intelligent Medical Objects and WebMD products are proprietary. Apelon's product has been proprietary, although it might move to open source in the near future.

There are two early CHV-related developments in nonprofit settings: the Planetree Classification System ( www.planetree.org) and women's health thesauri, for example, those developed by the former Boston Women's Collective ( www.ourbodiesourselves.org) and the Canadian Women's Health Network ( http://www.cwhn.ca). These are lay-friendly categorization schemes for health content, although not extensive representations of lay vocabularies. The Planetree system has been used by a number of consumer health libraries and on-line sites. The Canadian Women's Health Network's health information center uses the Canadian Women's Health Network thesaurus, consisting of more than 4,000 keywords, to catalog its online topic pages. Since the early 2000s, a number of informatics researchers have analyzed consumer-authored texts and found discrepancies between the health terms and concepts used by consumers and professionals. Based on these studies, a Consumer Health Vocabulary Initiative ( www.consumerhealthvocab.org) was formed and an Open Access Collaborative (OAC) CHV has been developed. There is a plan to submit OAC CHV to the National Library of Medicine in 2008 for incorporation into the UMLS. Overall, the CHV research and development has taken an audience-inspired and data-driven approach and has the potential to provide valuable tools for addressing the lay-professional language barrier in consumer E-health applications.

Optimizing Information Retrieval and Text Readability

Health domain-specific portals are available and popular. For instance, MedlinePlus.gov and WebMD received top rankings by Alexa Web Information Company based on visits in the health category (October 2007, www.alexa.com). Consumers reading this type of information are influenced by it, so misunderstandings may lead to poor decisions. Hence, it is important to facilitate the retrieval and understanding of accurate, precise, patient-specific, and actionable information.

Increased understanding can be accomplished by enhancing text readability; by facilitating precise information retrieval with optimized, domain-specific search engines; with query assistance; with information validation; and with optimal results presentation. Potential solutions such as automated translation to easier text, visualization, and animation require additional research. Yet, readability challenges and the optimal format for information presentation (such as the utility of accompanying graphics) remain underexplored areas.

Evaluating and Ensuring Information Quality

The evaluation of the quality of online health information has been a concern since the Internet became widely available to consumers. The medical literature began to address the problem in 1997, following Impiccatore et al.'s disturbing findings on uneven official recommendations for pediatric fevers.

The 1997 Mitretek report outlines seven core criteria of quality: credibility, content, disclosure, links, design, interactivity, and caveats. The (2007) MedlinePlus Guide to Healthy Web Surfing ( www.nlm.nih.gov/medlineplus/healthywebsurfing.html) makes similar suggestions. It encourages users to:

* Use "recognized authorities" (about us page, contact information)

* Focus on quality (editorial board members, credentials of members, posted selection policies)

* Be a cyberskeptic (sensitivity to potential quackery demonstrated by unreasonable health claims, obscure language, miraculous results, etc.)

* Look for the evidence (author identification, author credentials, contact information)

* Check for currency (dates on documents, current links, update information)

* Beware of bias (site sponsorship, clear identification of source of content)

* Protect their privacy (posted privacy policy)

As health information quality received more attention, policy statements and codes multiplied. Similar to MedlinePlus's aforementioned guidelines, others have incorporated quality criteria and packaged them for easy consumer application. For example, the Health on the Net Foundation ( www.hon.ch), a nongovernmental organization that began after an international conference in Switzerland in 1995, provides consumer-friendly quality guidelines. The DISCERN tool, an outcome of the DISCERN On the Internet Project funded by the British National Health Service, ( www.discern.org.uk/index.php) is designed to be used online, and features 15 questions that generate a rating of quality, based on the assessment of reliability, trust, and specific details about the information presented.

However, some researchers have questioned the reliability and validity of some widely used quality indicators. Bernstam et al. found that many commonly cited quality criteria (e.g., disclosure of ownership, disclosure of advertising) could not be reliably assessed by individuals with medical informatics training, thus raising the issue of their usefulness for an average consumer. Fallis and Fricke found little correlation between the indicators found in published guidelines and the accuracy of the information on a health website. In a study of 47 rating instruments purporting to evaluate health information online, Jadad and Gagliardi found none provided reliability and construct validity. In a recent update of the same study, the investigators found the number of rating instruments grew to 98. Although most of the originally surveyed 47 instruments were no longer functioning, 51 new instruments were found. Of these, 11 proved to be produced by defunct organizations, 35 provided no information about their quality criteria, and only five that revealed their criteria remained to be assessed in the follow-up study. Not one of the latter five reported reliability or validity data.

Because Healthfinder.gov currently lists many of these instruments as recommended evaluation tools for the consumer, a renewed effort to provide grounded guidelines for consumers to determine quality health information is a research priority. Innovative approaches to quality assessment would also be beneficial. For example, the work of Dutta-Bergman calls for a segmented approach to consumers, an approach that appreciates the demographic differences between respondents who trust a particular online source and those who do not. Mechanic calls for physicians to "sharpen their own communication skills" and work on strategies for new kinds of partnerships with consumers; he cites innovations like "training in communication skills; creative uses of the Internet and videotape technologies; improved 'customer service' programs; critical pathways for patients; and special educational aids." In addition, community expertise, as opposed to individual expertise, is assuming more dominance in the conversation. For example, Eysenbach postulates that in the age of Web 2.0, the opinion of influential peers/leaders in online communities becomes the key conveyor of source credibility. This points to the potential of community/user feedback as a contributor to a quality metric (although of course the ability to distinguish between quality and popularity is essential). The role of the health care provider as evaluator and gatekeeper of these metrics as well as the information they assess cannot be underestimated here; Cullen found that the medical specialist assumes an important role not only in the dissemination but also in the establishment of information quality, and not only for consumers but also for generalist practitioners. Finally, it is important to address the distinction between information completeness, accuracy, and quality. Although we (and many guidelines) treat accuracy as a prerequisite for quality, it is possible for quality information to be incomplete, and for accurate information to be of low quality. However, each of these three indicators is essential in order for the information to be actionable.

Incorporating Information Needs and Usability Concerns in Systems Design

Effective E-health resources anticipate users' needs and actions and present clear pathways to desired information; problems with interface design and the underlying information structure can severely limit their usefulness to consumers. Designing usable websites is especially challenging if target users have limited levels of health literacy, lack computer experience, or suffer from disabilities that complicate resource use.

Evangelista et al. assert that usability starts with needs assessment and "the most important issue when developing a health information system is that its design and content are anchored in what consumers really want and need." The guidelines for a website development site such as Usability.gov typically state that a user or audience's needs should be considered from the outset of the website creation process. Guidelines also suggest employing usability testing throughout the design cycle, as usability problems are most easily prevented when developers of the resources keep their users in mind throughout the design cycle. Usability.gov recommends the techniques of usability testing ranging from interviews to card sorting.

In reality, attention to actual users varies. Some articles cite, in passing, the use of "frequently asked questions" of library patrons or website visitors in design or redesign of information-oriented publications and websites. Chason describes a published directory of Florida psychiatrists that was created by the staff of a mental health facility library because this resource was frequently requested. Ritter et al. performed task analysis of user groups and examined documentation of their work productions (e.g., search engine logs), to assist in building academic department websites. The National Cancer Institute reports using a multifaceted approach to assessing audience needs and gathering feedback from users via its CancerNet website. Cole et al. also developed an information retrieval system using a differential diagnosis model. User need was measured according to its fit with Kuhlthau's six discrete stages of the information search process: task initiation, selection, exploration, focus formulation, collection, and presentation.

Although the problem of user needs assessment and usability is not unique to health websites, the latter frequently often share some common challenges and characteristics. Health websites are designed for widely diverse audiences (where user needs differ), and there is large variance in user background knowledge and computer experience. For example, ClinicalTrials.gov, the largest existing database of clinical trials, provides information to patients and caregivers, the press, clinicians wishing to make a recommendation, academic researchers conducting systematic reviews, medical journal editors, and policy makers. Health information resources also can provide scientifically complex and detailed information to individuals who may lack the cognitive skills and vocabulary necessary for effective navigation. As a result, designers need to carefully provide opportunities for both searching and browsing, and offer several hierarchical structures for browsing the data (e.g., grouping diseases both by bodily systems and by demographics groups they affect). Similar to the challenge of health literacy, consumer health informatics can improve the usability of consumer health resources by assessing or estimating relevant user demographics, and then provide tools to tailor the interface to different audiences.

Overall, the literature suggests that patients, family, and caregiver opinions on what information they need deserves more attention in systems design. Greater attention also is needed to usability issues that are specific to consumer E-health resources for diverse audiences.

Assessing Health Literacy for Information Tailoring

The second category of health literacy assessment involves large-scale national surveys of general adult literacy, which often include tasks that are situated within health contexts. The National Adult Literacy Survey (NALS) measures three aspects of literacy: prose literacy, document literacy, and quantitative literacy. The NALS assessment is based on tasks of increasing difficulty that are taken from texts and documents drawn from six everyday contexts. The easiest tasks require locating information, and the most difficult involve generating inferences and formulating/performing required numerical operations. Participant raw scores on each subscale are categorized into Levels 1 through 4. Health-related NALS activities provided a basis for the compilation of the Health Activities Literacy Scale (HALS).

Health literacy surveys are grounded in more complex literacy constructs than REALM and TOFHLA, and are more likely to generate the information needed for successful interventions. However, health literacy surveys also have important limitations that should be addressed in the next generation of health literacy assessment tools. For example, health literacy surveys do not encompass the multidimensional dynamics of how persons engage, understand, and act on health information, especially if one considers the conceptual framework raised in the first subsection of this article. Current measures are not based on an explicit theoretical health literacy framework, and fail to measure several important aspects of health literacy, such as oral literacy skills, conceptual understanding of health-related constructs, health vocabulary knowledge, and cultural beliefs. In addition, current measures do not provide a comprehensive assessment of health-related quantitative skills (or numeracy), are very dependent upon reading skills, and often cannot distinguish between health and general literacy. Finally, current tests do not evaluate basic technical competencies, which are essential in today's technology-driven health care environment.

Consumer health informatics creates the promise to ease the task of comprehensive assessment via adaptive testing techniques and making health literacy-based approaches more audience tailored, multidimensional, and pragmatic. However, health literacy needs additional operationalization and specificity to reach its potential as a robust independent or dependent variable in both consumer health informatics and clinical outcomes research.

Conclusion: Recommendations and Directions for Future Research

In an era in which the public is asked to play an increasingly active role in their health care, consumer health informatics seeks to bridge the digital divide and support more consumers' ability to understand and author health information. However, this promise is ripe with challenges and potential pitfalls, as this article attests. Fortunately, the same challenges present an exciting time for the field, with a surplus of interesting theoretical and applied research problems to address.

Throughout this article, we discussed the potential of informatics to support consumers by bridging two gaps: (1) between user needs and the content of information resources, and (2) between user competencies and resource complexity. With respect to user needs, novel methods to map how persons converge on health information resources need to be developed. In doing so, it is important to be mindful of the aforementioned current emphases on horizontal communication from health authorities to consumers, from consumers to health professionals, and among consumers, as well as among all possible participants in the creation of the public's health information and health care policy environment. A related issue is to explore ways to employ informatics tools to assess the quality and gently moderate consumer-generated content in venues such as online discussions and personal health records.

The authors believe informatics support has the potential to enable developers to match user competencies and resource complexity. However, the devil is in the details-significantly more work needs to be done to ascertain the demographic and situational characteristics that affect information needs and processing. One potentially promising technique is log analysis, frequently used in market research consumer segmentation. An underlying architecture of resources that permits customization is another interesting approach that merits consideration. In addition, the authors believe the field needs advances in the areas of consumer health vocabulary development and readability measurement.

Yet, there are no shortcuts to encompass the dimensions of health communication that are outlined in the article's opening subsection. Mindful of the challenges, the authors make the following specific recommendations to consumer health informatics researchers and designers:

1 Consumer health informatics research and design should focus on drawing upon communication and social science research that addresses the social and emotional aspects of information seeking and acquisition behaviors. The understanding that health communication is horizontal and multidirectional (not top-down or unidirectional) needs to be a conceptual lynchpin of consumer health informatics research.

2 In reaching out to health consumers, the field should make use of a wide range of traditional and novel health information resources, from static informational Web pages to patient forums and virtual reality environments. A wide range of tools and resources should also be used to educate consumers about health issues and improve health literacy. These may include traditional informational pages and portals, as well as dictionaries, encyclopedias, tutorials, risk calculators, and information visualization tools.

3 Patients' and consumers' information needs and usability concerns should be given more consideration. Additional research is needed to understand the public's information needs as they pertain to health.

4 In order to support users with limited health literacy and bridge the digital divide, resources should aim at tailoring information content and presentation to intended users, or targeted audiences. This requires systematic research into the effect of various user characteristics on information behavior, and better tools for assessing the known facets of health literacy.

5 Reaching health consumers with the appropriate information can be improved via further development effort in the areas of consumer health vocabularies, information retrieval, and readability. Research in this areas can benefit from drawing on large amounts of existing data recorded by consumer E-health communication applications (e.g., queries, e-mails, and usage logs).

6 More accurate, well-publicized information quality indicators will benefit health consumers. These resources also need to be better maintained over time.

7 Greater research attention needs to be given to health information needs of caregivers, family members, and peer groups. Additional research is also needed into health information needs and information-seeking patterns of special populations (e.g., ethnic minorities, individuals with disabilities).

Consumer health informatics practitioners and researchers sometimes disagree on whether the primary goal of health communication and providing health resources is to provide clear, usable information or to promote behavioral change. In either case, all might agree that it is desirable to motivate educated consumers. Although many health educators are concerned about the clarity of their message, fewer worry about the "attractiveness" of the message to people whose health is not immediately affected (e.g., healthy smokers). This is yet another area where informatics can benefit by adopting techniques from marketing, entertainment, and the news media. The opportunities for research and application are numerous, as are the challenges. The field of consumer health informatics is at an exciting point, where new developments can bring innovative solutions to the challenge of effective communication with health consumers.

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Developing Informatics Tools and Strategies for Consumer-centered Health Communication

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Consumer health information resources provide health information to lay users, hopefully to empower patients, caregivers, families, and consumers; improve decisions; and ultimately foster better public health outcomes. Although the number of consumer-oriented resources keeps growing, their effective use requires significant lay knowledge and skills in areas ranging from health terminology knowledge to effective use of electronic media.

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Abby Smith

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Processing Knowledge and Information to Support Epidemiology and Monitoring Disease Outbreaks

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Processing Knowledge and Information to Support Epidemiology and Monitoring Disease Outbreaks

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Natasha Samuels and Jamie Lafond

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Public Health and Epidemiology Informatics: Recent Research and Trends in the United States

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Public Health and Epidemiology Informatics: Recent Research and Trends in the United States

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Summary

Objectives

To survey advances in public health and epidemiology informatics over the past three years.

Methods

We conducted a review of English-language research works conducted in the domain of public health informatics (PHI), and published in MEDLINE between January 2012 and December 2014, where information and communication technology (ICT) was a primary subject, or a main component of the study methodology. Selected articles were synthesized using a thematic analysis using the Essential Services of Public Health as a typology.

Results

Based on themes that emerged, we organized the advances into a model where applications that support the Essential Services are, in turn, supported by a socio-technical infrastructure that relies on government policies and ethical principles. That infrastructure, in turn, depends upon education and training of the public health workforce, development that creates novel or adapts existing infrastructure, and research that evaluates the success of the infrastructure. Finally, the persistence and growth of infrastructure depends on financial sustainability.

Conclusions

Public health informatics is a field that is growing in breadth, depth, and complexity. Several Essential Services have benefited from informatics, notably, "Monitor Health," "Diagnose & Investigate," and "Evaluate." Yet many Essential Services still have not yet benefited from advances such as maturing electronic health record systems, interoperability amongst health information systems, analytics for population health management, use of social media among consumers, and educational certification in clinical informatics. There is much work to be done to further advance the science of PHI as well as its impact on public health practice.

Keywords: Epidemiology, disease outbreaks, public health practice, Public Health Informatics, health services needs and demand

Introduction

Public health informatics (PHI) was defined at the beginning of the century, as "the systematic application of information and computer science and technology to public health practice, research, and learning," [ 1] and an agenda to advance the field was proposed by a group meeting at the American Medical Informatics Association (AMIA) 2001 Spring Congress [ 2]. The definition was refined in 2014 [ 3]: The scope of public health informatics includes the conceptualization, design, development, deployment, refinement, maintenance, and evaluation of communication, surveillance, information, and learning systems relevant to public health. Subsequently, this definition and the agenda [ 4] have been updated to reflect four key drivers: 1) a global reduction in infectious disease rates in combination with a growth in non-communicable chronic diseases; 2) the broader implementation of health information systems across the world; 3) continued rising costs of health care in nearly every nation; and 4) a greater emphasis on patient involvement in care decision-making processes. The result is a complex scope for public health informatics that intersects with similarly expanding fields of Global Health Informatics (public health and health care in low-resource settings) and Population Health Informatics (healthcare and social services to clinical populations), as depicted in . During the first decade of the twenty-first century, PHI efforts around the world were characterized by a focus on the core public health functions of monitoring populations: early detection of bioterrorism [ 5], such as Anthrax attacks in the U.S. [ 6] or the Tokyo subway attacks [ 7], as well as global health threats such as SARS [ 8], and the H1N1 pandemic [ 9]. While the threat of a large-scale epidemic has not diminished in recent years, as evidenced in 2014 by MERS [ 10, 11] and Ebola [ 12] changes in national policies and funding priorities have steered public health informatics in new directions.

Today public health informatics not only addresses public health functions in low-resource settings, but also contributes to national implementations of health information systems such as electronic health records ( Delivery of healthcare in low-resource settings), the measurement of population health indicators within and across jurisdictions ( Health planning), and conversations about the role of the citizen/patient in self-monitoring and self-management of both disease and well-being (health) ( Care of clinical populations). Data science [ 13] comprising predictive analytics (chosen as the special topic of the 2014 edition of the Yearbook [ 14]), and statistical and epidemiological methodology, is incorporated into the practice and delivery of health services to better manage populations with complex and chronic illnesses and to provide a methodology common to all 3 domains of PHI, Global Health Informatics and Population Health Informatics [ 15].

In this article, we discuss the evolving scope of PHI through recent trends observed principally in the United States, and then we highlight advancements in the field evidenced in recent literature.

Methods

Our work is based on efforts by the American Medical Informatics Association (AMIA) Public Health Informatics Working Group to summarize recent literature for presentation at an annual "Year in Review" [ 16]. For that review, we performed multiple searches of the biomedical informatics literature published in MEDLINE between January 1, 2012 and December 31, 2014. Supplemental articles were gathered by reviewing the bibliographies of selected articles and by soliciting suggestions from PHI working group members using AMIA listservs. We used the following MEDLINE Subject Headings (MeSH) keywords in various combinations to maximize sensitivity: "public health informatics", "public health", "informatics", and "information systems". Use of MeSH headings was preferred, although articles were also identified using keywords to check article titles and abstracts. The search strategy was similar to that used by the IMIA Yearbook in Informatics to select candidate "best papers" [ 17].

We used a variety of inclusion and exclusion criteria to narrow the list of candidate articles. To be included, an article needed to (a) focus on a topic related to public health practice or research; and (b) include informatics, information science, or computing as the primary subject of the study or a main component of the study methodology. We used a broad lens to assess each article's relevance to public health practice and research, including: 1) activities conducted by, with, or involving a local, state, or federal health agency; 2) assessment and monitoring of diseases and health outcomes; 3) primary and secondary prevention of diseases; 4) social determinants of health as well as health disparities; and 5) development of the public health workforce including PHI education and competencies. Articles were excluded if they did not constitute original research such as letters, editorials, perspectives, opinions, whitepapers, comments, and study protocols. We further excluded articles outside the United States to limit the scope.

Selected articles were synthesized using a thematic analysis to create a broad survey of advances in the field of PHI. Articles were grouped into themes aligned with a framework based on the Essential Services of public health, a hierarchical typology defined by the National Academy of Sciences, whose top level comprises Assessment, Policy Development, and Assurance [ 18].

Results

From a policy perspective, the disease focus of public health is changing. Multiple epidemiological studies provide clear evidence that modern health care systems, even beyond the developed world, must less focus their attention on infectious diseases and more on chronic (non-communicable) diseases [ 19]. For example, worldwide tuberculosis incidence has fallen at the average rate of 1.3% per year over the past twenty years [ 20], while the incidence of diabetes mellitus continue to rise and is projected to be as high as 33% by 2050 [ 21]. This change requires a broadening of public health information systems to focus on the routine, systematic collection of a wider array of data on population health indicators, including social determinants of health [ 22, 23, 24]. Many of these data have been collected in the past using health surveys, and managed as distinct silos of information distributed by specific health agencies. Newer health policies, such as the Patient Protection and Affordable Care Act in the U.S., require the integration of chronic disease data with clinically-derived indicators to paint a broader picture of health status for a given community. In the United States, these efforts are sometimes referred to as population health informatics [ 25], despite a semantic overlap in purpose and activities with public health indicators that were long performed by ministries of health in other countries. Such efforts further seek to incorporate "data science" [ 13] as well as predictive analytics (discussed in last year's Yearbook [ 14]) into the practice and delivery of health services to better manage populations with complex and chronic illnesses [ 15].

Policy now also addresses health information technology. In the United States, the 2010 HITECH Act introduced "meaningful use" (MU) incentives to encourage hospitals and general practitioners to adopt EHR systems [ 26]. In the past four years, EHR adoption rates among non-federal acute care hospitals increased from 15% to over 90% [ 27]. We shall see the several roles these incentives play in American PHI.

These public health and clinical policies have led to an investment in health informatics by public health authorities, which rests on the promise that information and communication technology (ICT) would support health systems in creating efficiencies, improving care quality, and lowering health care spending [ 28]. Globally, health-related costs are rising [ 29] due in large part to a globally aging population combined with the rapid growth of chronic disease burden. Ministries of health seek to implement integrated health informatics programs as part of a broader strategy to better coordinate care, reduce waste and inefficiencies while supporting better management of costly diseases [ 30].

In the US, these population-health goals are represented by the policy push to implement patient-centered care models, which aim to achieve better, coordinated care, while reducing costs. Patient-centered or patient-focused care models seek to apply patient preferences, self-management, and self-reported outcomes into clinical decision-making. These efforts attempt to build patient-provider trust and communication. The establishment of the Patient-Centered Outcome Research Institute as part of the Affordable Care Act provides a novel funding stream and aims to build that trust from the ground up through patient engagement [ 31].

Another patient-centered effort concerns social services. The UK and other countries are further implementing "social care informatics" [ 32] where "the human-services community is working towards integration and interoperability of social services" into health systems. For example, the Administration for Children and Family (ACF), a division of the U.S. Health and Human Services agency, funded 7 state-based interoperability projects in 2013 to provide models for, and demonstrate the value of, interoperability beyond Medicaid eligibility, and include case management [ 33]. A major goal is providing "no wrong door" services [ 34], where services are focused on the client's and family's needs, rather than on the bureaucracy's, which the family may have contacted in no particular order.

The Public Health Informatics Stack

Despite a rapidly evolving context, the Essential Services of Public Health [ 18, 35] - Assessment (of public health situations and threats), Policy Development (to address what was assessed), and Assurance (to implement the policies)-remain the core activities performed by public health authorities. In order to depict and systematize the analysis of the current international trends in PHI, we reinterpreted high-level concerns outlined in the updated agenda for PHI[ 4] into a "stack" of layers (like the OSI stack for networking [ 36]) that provide a supporting infrastructure for the Essential Services (see ).

From the informatics perspective, public health services are supported by a socio-technical infrastructure [ 37] "delivered" to public health, relying on governance policies and ethical principles of local public health systems. In turn, that infrastructure depends on education and training of the public health workforce, on research and development that results in a novel infrastructure, adapts the existing infrastructure to the public-health domain, or evaluates the success of the infrastructure. Finally, both the persistence and growth of the infrastructure depend on financial sustainability.

In the remainder of the paper, we highlight recent literature that demonstrates the evolving PHI stack (see ) as influenced by the public health context. We start at the top of the stack.

Public Health Essential Services

In the PHI "Year In Review" presented at the 2014 AMIA, the US Essential Services covered by the literature were presented:

Notifiable Disease Surveillance (clinician lab results or diagnoses reported to state agencies), Syndromic Surveillance (clinical data reported to state agencies on an ongoing basis), Population Health (broadly conceived), Immunization Information Systems (reporting of vaccinations; access to clinicians; immunization forecasting), Environmental systems (non-clinical sources), and Other [ 38]. Each of the first four topics has a relationship to the MU regulations mentioned earlier. For Stage 1, hospitals were obliged to demonstrate their capability to submit reportable lab results and data for syndromic surveillance to a state agency [ 39]. In MU Stage 2, submission of immunization information is now a core requirement, and two further mhealth menu options have been added: reporting cases to cancer registries and reporting cases to other registries [ 40].

Conclusion

PHI is a field that is growing in breadth, depth, and complexity. In this essay, we examined the roles PHI contributes in each of the major Essential Services typology. Yet many specific, or component, Essential Services still have not benefited from the sea changes in the socio-technologicial contexts described above. While social media have been to for monitor the health of the population and to deliver healthcare, we have just seen the beginnings of the use of technologies for "Informing and Educating."[ 55] (2 Beyond machine translation, there are entire areas of mass customization of health messaging that should take advantage of the same technologies that for-profit organizations currently use to identify which advertising should be displayed to a specific user.

The full power of modern simulations and analysis is rarely made available to departments or ministries of health to "Develop Policies." The ability to monitor wearable technologies, or to monitor Web-page access, provides a window to possibilities to "Enforce Laws," although this needs to be limited, in keeping with Ethical principles that still need to be defined.

The full power of modern simulations and analysis is rarely made available to departments or ministries of health to "Develop Policies." The ability to monitor wearable technologies, or to monitor Web-page access, provides a window to possibilities to "Enforce Laws," although this needs to be limited, in keeping with Ethical principles that still need to be defined.

Finally, the degree to which ICT can support non-informatics public health training and life-long learning-and to what extent PHI should be an expected competency in both contexts-remains to be worked out.

PHI, then, in its extended form (see ) has as many Grand Challenges as clinical informatics. We hope future IMIA reviews document continued, sustained progress in both research and practice.

Acknowledgements

We wish to thank Louis Imperiale and Fardad Gharghabi for their help in identifying and reviewing recent public health informatics articles. We further thank Anne Turner, Jamie Pina, and Janise Richards for their help and support with the AMIA Year in Review sessions in both 2013 and 2014, which provided the foundation for these comments.

Footnotes

¹ RHIO=Regional Health Information Organization

References

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23. Committee on the Recommended Social and Behavioral Domains and Measures for Electronic Health Records Institute of Medicine, B on PH and PHP. Capturing Social and Behavioral Domains in Electronic Health Records: PHASE 1. Washington DC: National Academies Press; 2014. [ Google Scholar]

27. Charles D, Gabriel M, Furukawa MF. Adoption of Electronic Health Record Systems among U. S. Non -federal Acute Care Hospitals : 2008-2013. ONC Data Br 2014;2008(16):2008-13. [ Google Scholar]

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# data[].attributes.attachment_link.title
Public Health and Epidemiology Informatics: Recent Research and Trends in the United States

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To survey advances in public health and epidemiology informatics over the past three years. We conducted a review of English-language research works conducted in the domain of public health informatics (PHI), and published in MEDLINE between January 2012 and December 2014, where information and communication technology (ICT) was a primary subject, or a main component of the study methodology.

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Community Health Risk Assessment: Tools for Acquiring Knowledge

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Community Health Risk Assessment: Tools for Acquiring Knowledge

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Natasha Samuels