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We must not blame the individual for not understanding information that has not been made clear to him or her.

Everyone, no matter how educated, is at risk for misunderstanding health information if the issue is emotionally charged or complex.

In almost all cases, physicians and other health professionals, try to and believe they are, communicating accurate information.

In some cases, patients may believe they have understood directions, but may be embarrassed to ask questions to confirm their understanding.

Health care organizations and their systems and procedures have a significant role to play in ensuring understanding in the health care setting.

It is increasingly difficult for people to separate evidence based information, especially online, from misleading ads and gimmicks.

The communication of "risk" in an effective and fair way continues to be a challenge for both the provider and the patient.

There are additional challenges in understanding how to select insurance plans and benefits, especially for those who have not previously been insured.

The provider offers a clear understanding of what to do to improve one's health, why is it being done, and, precisely, how to do it.

" This medicine will lower your blood pressure, which will help your heart. You need to take the green tablets, with food. That's one green tablet every day when you wake up with your breakfast, and one green tablet after dinner and before you go to sleep."

The provider needs to confirm the individual has a fundamental understanding of the information exchange, i.e. more than a nod of the head or an uh huh.

Remember in school the teachers who said, "Any questions?," gave the class no time to think of a question to ask, and moved on?

You will probably remember more warmly the teacher who took the time to probe the question, "What do you think your risk is of having the complications I mentioned? What are you going to do with that information?"

Using the "teach back" method , having the patient repeat the information back to the provider, can help in ensuring there has been understanding. Full Text

Ideally, skills related to "teach to goal" help the patient improve his or her own self management. Full Text

Health care systems can also address limited literacy. Full Text

For example, Christina, has had a sore throat for two weeks. Her throat is not getting better. She finally goes to her neighborhood urgent care center. The staff hands her their "new patient" forms. The forms are not the same as any others she has seen before.
Among the questions are,

"Are you receiving any medical care? If so, elaborate"

"Do you drink alcohol?"

"List the medicines you are using"

"Elaborate" is not the best word for people with reading or language challenges.

Christina is at the urgent care center to receive medical care. The question is completely indefinite in terms of both the kind of "care" at what time, for this issue? or an annual physical? All the medical care she has received as an adult?

This approach provides no real information to the health care provider. And may be questioned by the patient as not related to a sore throat? A better time to ask this would be when writing the prescription. That would relate to any potential negative reactions or interactions.

After presenting her insurance card and paying her co-pay, Christina is taken back to a treatment area.

What are some of the problems here?

Once in the treatment area, a physician's assistant takes a throat culture to determine if Christina has a strep infection, but forgets to explain that it is only a short term test, and that a second culture will be done in a lab to confirm strep over the next day. The medical worker wants to be sure the patient is treated or "covered," so Christina leaves the clinic with an antibiotic prescription, and she takes it to the drugstore and has it filled.

Christina has trouble understanding the instructions, but does take the medicine for a few days. Her throat starts to feels better, and then she stops taking the medicine. She is reasoning that she is "saving" it for another time. Christina decides the next time she had a sore throat, she'll take the remainder of the prescription medicine and skip the urgent care center. She feels she's being smart and thrifty, but she is making a poor choice.

What are the dangers connected to her decision?

Antibiotic resistance.

There are two main kinds of germs, bacteria and viruses. They both cause illness. Antibiotics can only kill bacteria. Although antibiotics can save lives, some germs get so strong they can resist antibiotic drugs. This is called resistance. The drugs don't work as well. Germs can even pass resistance to other germs. The more a person uses an antibiotic, the more likely germs will resist it. Because antibiotics are used in a variety of ways including in acne medication or with animals used for food, there are additional sources of antibiotics to the system beyond prescribed medicines.

Yes, antibiotics can kill bacteria like the bacteria that cause tuberculosis, but they do not work against viruses. Examples of things caused by viruses are: ear infections, sore throats, sinus problems, coughs, bronchitis, flu, and colds.

So, what can Christina do to protect herself?

Ask the provider why he or she is prescribing an antibiotic?

Ask what else she can do to feel better sooner.

If the healthcare worker feels that the sore throat is a symptom of a bacterial infection and does prescribe the antibiotic, what can Christina do to protect herself?

Take the medicine EXACTLY as prescribed. If she doesn't understand the directions, she needs to ask the pharmacist and write down what is said.

Don't skip doses.

Don't stop taking the medicine because she feels better. Take all the doses.

Don't take leftover medicine.

Don't take someone else's medicine.

The FDA is requiring new labeling for doctors. One of the new labels will say that antibiotics should only be used for bacterial infections. Another label will remind doctors to explain the right way to take antibiotics to their patients.

Training and Toolkits

Workshops & Activities

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We must not blame the individual for not understanding information that has not been made clear to him or her. Everyone, no matter how educated, is at risk for misunderstanding health information if the issue is emotionally charged or complex. In almost all cases, physicians and other health professionals, try to and believe they are, communicating accurate information.

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Are you confused about health information? You're not alone | Lisa Fitzpatrick | TEDxMidAtlantic

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Health Literacy Basics for Health Professionals

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Journal of Public Health Management and Practice

Practice Full Report

Stephanie Santana, MPH, Cindy Brach, MPP, Linda Harris, PhD, Emmeline Ochiai, MPH, Carter Blakey, BS, Frances Bevington, MA, Dushanka Kleinman, DDS, MScD, and Nico Pronk, PhD, MA, FASCM, FAWHP

Content:

Healthy People 2030, the fifth iteration of the Healthy People initiative, provides science-based national health objectives with targets to improve the health and well-being of Americans. For the first time since its 1979 establishment, the Healthy People framework aims to attain health literacy as an overarching goal and foundational principle to achieving health and well-being. Growing literature on health literacy describes it as a concept not solely reliant on individual capabilities but also on organizations' ability to make health-related information and services equitably accessible and comprehensible.

Program:

The US Department of Health and Human Services (HHS) updates the Healthy People objectives each decade based on the most current science. For the development of Healthy People 2030, HHS drew on recommendations from the Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030 (Secretary's Advisory Committee), an independent advisory committee of national health experts, to update the 20-year old individual-focused Healthy People definition of health literacy. HHS solicited input from members of the public and users on the proposed changes to that definition.

Implementation:

HHS published a Federal Register notice to solicit public comments, which were qualitatively analyzed by government staff.

Evaluation:

The 2 separate analyses revealed plurality support for improving the definition to focus on both individual and organizational roles in health literacy. Results led HHS subject matter experts to update the definition to include definitions of personal health literacy and organizational health literacy. Healthy People 2030's expanded health literacy definition reflects the most current science and input from the Secretary's Advisory Committee, public comments, and HHS subject matter experts.

Discussion:

The updated definition is intended to advance Healthy People 2030's health literacy goals particularly as more organizations in public health and other sectors acknowledge their role in the delivery of quality health information and services.

Keywords: disease prevention, health communication, health competencies, health literacy, health promotion, Healthy People, organizational health literacy, population health

For the first time in 20 years, and with the launch of Healthy People 2030, the Healthy People initiative has expanded its definition of health literacy. The updated health literacy definition reflects recommendations from the Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030 (Secretary's Advisory Committee) 1 and the inaugural inclusion of health literacy in Healthy People 2030's overarching goals and as a foundational principle. 2 The expanded definition also represents a culmination of input from members of the public and users across the health spectrum and growing sentiment that addressing health literacy, a significant public health challenge, 3- 10 requires support at the organizational level. The Healthy People 2020 health literacy definition addresses an individual's capacity to understand health information; the Healthy People 2030 definition 11 augments the Healthy People 2020 definition and recognizes that organizations play a role in bolstering health literacy by making health-related information and services accessible and comprehensible (Table ​(Table1). 1 ). This article highlights the process, rationale, and implications of the expanded definition as we look toward a new decade of Healthy People.

TABLE 1

Personal health literacy is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

Organizational health literacy is the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

The Evolution of the Healthy People Definition of Health Literacy

The Healthy People initiative is run by the US Department of Health and Human Services (HHS) Office of Disease Prevention and Health Promotion (ODPHP), which is congressionally mandated to assist in the analysis of issues and problems related to health information. 13 One way in which ODPHP fulfills this mandate is to support efforts to improve health literacy. For Healthy People 2010, the ODPHP examined the science and literature and sought input from private and public users regarding the inclusion of health literacy into Healthy People 2010. These efforts led to the health literacy objectives and the incorporation of health literacy with a definition based on the work by Scott Ratzan and Ruth Parker, who in the year 2000 wrote:

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. 14(pvi)

Noting that reducing health literacy gaps "is essential to reduce health disparities," Healthy People 2010 incorporated the objective to "Improve the health literacy of persons with inadequate or marginal literacy skills." 1 It also included objectives on provider communication that reflected that the health care system also would need to change to achieve Healthy People 2010's overarching goals of increasing quality and years of healthy life and eliminating health disparities. To help make progress on objectives relating to health communications, including the improvement of health literacy, an Healthy People 2010 health communications action plan was developed by subject matter experts from the federal government, academic institutions, and medical associations. Although the definition focused on individuals' skills, or lack thereof, the action plan for implementing the Healthy People 2010 health communication objectives recognized the need to reduce the literacy and other demands of the health care system and stated:

Healthcare and public health delivery systems are complicated bureaucracies .... Even highly motivated and educated individuals may find the systems too complicated to understand, especially when persons are made more vulnerable by poor health. Consequently, assessments of individuals' health literacy skills may actually reflect system complexity rather than individual skill levels. 15(p42)

The subsequent two decades have seen a growing appreciation among researchers for the larger societal and organizational contexts impacting health literacy. For example, Baker 16 constructed a conceptual model showing health literacy as a product of individuals' capacities and the difficulty and complexity of written and spoken health messages. Paasche-Orlow and Wolf noted in their 2007 article on the causal pathways between health literacy and health outcomes that "Health literacy should be viewed as both a patient and a system phenomenon." 6 Parker and Ratzan, authors of the initial definition, noted in 2010, "Multiple sectors (including education, health, healthcare, businesses, and social services) have responsibility for reaching the vision of a health literate society." 17

Healthy People 2020 retained the health literacy definition from Healthy People 2010 and expanded its health literacy objectives to reflect organizations' role in improving patients' understanding of health information and services by focusing on patient-provider communication and quality digital tools. Progress on these was tracked by the Agency for Healthcare Research and Quality, which added to existing health literacy questions in its Medical Expenditure Panel Survey. 18 Healthy People 2020 did not retain the Healthy People 2010 population-based health literacy objective, because the data source used to track progress, the National Assessment of Adult Literacy, had been discontinued. 19

Toward Healthy People 2030

The launch of Healthy People 2030 marks the first time in the Healthy People initiative that health literacy is part of its framework. Attaining health literacy is recognized in both the Healthy People 2030 foundational principles and overarching goals as key to achieving health and well-being. 2

While achieving the Healthy People 2030 health literacy objectives will require multisectoral efforts, the responsibility for shepherding the Healthy People 2030 health literacy objectives over the next decade rests with the Healthy People Health Communication and Health Information Technology (HC/HIT) Topic Area Workgroup, which consists of federal subject matter experts tasked with developing, monitoring, and assessing the Healthy People 2030 objectives relating to their topic area. The HC/HIT Workgroup will track 3 Healthy People 2030 core health literacy objectives that have been carried forward from Healthy People 2020 that focus on confirming patient understanding, improving patient-provider communication, and increasing shared decision making (Tables ​(Tables2 2 and ​and3). 3 ). In addition, the HC/HIT Workgroup will work on advancing developmental and research health literacy objectives, which entails generating evidence and finding data sources to track progress.

TABLE 2

Core objectives
Most Healthy People 2030 objectives are core, or measurable, objectives that are associated with targets for the decade. Core objectives reflect high-priority public health issues and are associated with evidence-based interventions. Core objectives have valid, reliable, and nationally representative data, including baseline data from no earlier than 2015. If applicable, they have a measure of variability. Data will be provided for core objectives for at least 3 time periods throughout the decade.

Developmental objectives
Developmental objectives represent high-priority public health issues that are associated with evidence-based interventions but do not yet have reliable baseline data. To become a core objective, a developmental objective needs reliable data.

Research objectives
Research objectives represent public health issues with a high health or economic burden or significant disparities between population groups-but they are not yet associated with evidence-based interventions. Research objectives may also be added throughout the decade to address emerging issues. To become a core objective, a research objective needs reliable baseline data and associated evidence-based interventions. If a research objective evolves to meet these criteria, a Healthy People work group may propose to the Healthy People Federal Interagency Workgroup that it become a core objective.

TABLE 3

Core objectives

Increase the proportion of adults who report that their health care provider always asked them to describe how they will follow instructions (HC/HIT-01).

Reduce the proportion of adults who report poor patient and provider communication (ie, listening, explanations, disrespect, time) (HC/HIT-02).

Increase the proportion of adults who report that their health care providers always involved them in decisions about their health care as much as they wanted (HC/HIT-03).

Developmental objectives

Increase the proportion of persons who find their online medical record easy to understand (HC/HIT-D10).

Increase the percentage of limited-English-proficient (LEP) adults who report that their doctors or other health providers always explained things in a way that was easy to understand.

Research objective

Increase the health literacy of the population (HC/HIT-R01).

The Healthy People 2030 Health Literacy Definition Development Process

The inclusion of health literacy in the Healthy People 2030 framework led the Secretary's Advisory Committee to produce a Health Literacy Brief and recommend that Healthy People 2030 adopt a new, systems-based definition: "Health literacy occurs when a society provides accurate health information and services that people can easily find, understand, and use to inform their decisions and actions." 21

HHS formed a committee of federal staff (the Definitions Committee) to evaluate the Secretary's Advisory Committee's recommendations. The Definitions Committee reviewed the original Healthy People 2010 definition of individual health literacy with an appreciation for the considerable research, policy, and programmatic progress associated with it. The call for a dynamic, systems approach to health literacy by the Secretary's Advisory Committee also resonated with the Definitions Committee. The Definitions Committee considered 3 options: (1) maintaining the 2-decade-old individual-level definition; (2) adopting the suggested systems-level definition; or (3) combining the definitions.

The Definitions Committee designed a rigorous process to obtain input from and widely vet any recommended definitions with users within HHS and throughout the United States. This process involved internal discussions with other Healthy People Topic Area Workgroups and members of the HHS Health Literacy Workgroup to obtain their feedback regarding the original individual definition, the proposed systems definition, and suggestions for alternatives. The Definitions Committee also issued a Federal Register notice to solicit public comments between June 4 and August 5, 2019, on the proposed revision to the health literacy definition for Healthy People 2030. The 187 public comments were analyzed both internally and by an outside organization with experience analyzing Healthy People public comments. Results revealed support for the individual- and the systems-level health literacy definitions with a significant plurality favoring a combined approach. Public comments also included suggestions for improving both the individual and systems definitions.

These results reflected the health literacy literature from the past 2 decades that supported the conceptualization of health literacy as both an individual issue and a systems issue. The Definition Committee concluded that there is sufficient evidence that attaining the Healthy People 2030 overarching goal requires capturing, in a quantifiable way, both the elements of individual health literacy and the key organizational actions that align with individuals' health literacy needs. Therefore, the Definition Committee determined that Healthy People 2030 needed 2 definitions to measure and track each level of health literacy.

Responding to all the input received, the Definition Committee crafted 2 definitions for health literacy that complement each other in focus and scope. One definition describes what constitutes the abilities of individuals to make informed health decisions and actions. The second definition describes what organizations do to enable individuals to make informed health-related decisions/actions. Both the Healthy People HC/HIT Topic Area Workgroup and the HHS Health Literacy Workgroup reviewed and endorsed the definitions.

Benefits of Both a Personal and Organizational Focus on Health Literacy

Personal health literacy

Maintaining a skills-based definition that provides continuity with the concept that people possess a degree of health literacy that can be assessed at a given point in time will have a critical role in advancing health equity. The definition can aid the implementation of evidence-based interventions focused on ensuring equal access to information and services by those who face health literacy challenges. Moreover, the updates should prompt new ways of studying and promoting personal health literacy.

Changes from the old definition include (1) an emphasis on the use of health information and services, (2) a shift from appropriate decisions to informed decisions and actions, and (3) inclusion of a public health perspective whereby personal health literacy can be used to promote the health of others. Including a focus on taking health-related action may reinforce the idea that improving health literacy does not end when a person understands health information and how to use health services. People must be able to use the information and services to not only make decisions but also take action-whether at the health care provider's office, online at home, or in a public institution. The new definition also broadens health literacy from an ability to use health information and services on one's own behalf to an ability that can also further public health. For example, effectively comprehending health-related polices and services can impact voting, 22 choosing where to live or which health care provider to see, or even assisting loved ones with individual health needs. The ability to understand health information and how to use health services is a key skill for those working at the community level to address social determinants of health that could be measured and targeted for improvement.

The new Healthy People 2030 health literacy definition in no way limits the use of existing health literacy measures 23 or important work to improve personal health literacy, such as adhering to National Health Education Standards 24 or expanding adult education and English Learner programs. Rather, it builds upon the old definition and encourages health literacy improvement efforts to address the skills that enable people to move from understanding to action and from their own health to the health of others.

Organizational health literacy

The adoption of a definition for organizational health literacy signals that personal health literacy is contextual and the responsibility for health literacy does not rely solely on the individual. The definition also points out that organizations must be equitable in how they address health literacy. By taking action to reduce the complexity of health information and health systems, with particular attention to the needs of diverse populations, producers of health information and services can contribute to the Healthy People 2030 overarching goal of attaining health literacy, eliminating health disparities, and achieving health equity.

Striving to become a "Health Literate Organization" can lead to positive outcomes. A growing body of health literacy intervention research shows promising results, especially for those with limited health literacy. 2 Interventions that clarify and simplify health care terms and procedures can work in a medical setting: patients can become more active in caring for themselves, including using recommended preventive services, adhering to medication regimens, and managing chronic conditions. 1 Shared decision making can enhance patient satisfaction, treatment adherence, and health status. 1 Within the broader public health realm, organizations that produce health-related information also can work toward clear communication and cultural competency in an effort to make sure that key messages are equitably shared with underserved populations. For example, since 2000, federal agencies have had to ensure that those with limited English proficiency have "meaningful access" to the services provided by the agencies. 25 Furthermore, the establishment of the HHS Health Literacy Workgroup in 2003 has been another way HHS has encouraged the importance of organizational efforts. The HHS Health Literacy Workgroup's mission is to create understandable and actionable health information; support and facilitate engaged and activated health consumers; and refresh the health literacy science base on a regular basis. Research has shown that health care organizations are actively trying to reduce health literacy demands. 5, 18, 26, 27 A standard definition for health literacy may further support such efforts.

The expansion of the health literacy definition to include an organizational definition is a natural extension of HHS' long-standing efforts to promote health literacy. Raising health literacy awareness among health professionals and organizations is a crucial component for helping individuals achieve positive health outcomes. As recognized in the National Action Plan to Improve Health Literacy (National Action Plan), "without clear communication, we cannot expect people to adopt the healthy behaviors and recommendations that we champion." 10 The National Action Plan emphasizes a multisector approach to ensure that appropriate health information helps people make informed decisions and that health services are delivered in ways that are easy to understand and that improve health, longevity, and quality of life. 10 As organizational health literacy matures, the charge to the research community is to test additional interventions to improve organizational health literacy and develop measures to track its progress at the systems level. Some measures of organizational health literacy have already emerged. 28 These developments could pave the way to assess national progress in organizations becoming health literate in the future.

Next Steps: Health Literacy After the Launch of Healthy People 2030

The launch of Healthy People 2030 marks the beginning of a new decade of health literacy improvement. Users, including the public health workforce, organizations, policy makers, and others, can help advance health literacy through the following steps:

Using, disseminating, and implementing the expanded Healthy People 2030 health literacy definition to inform programs and policies at the individual and organizational levels.

Using the Healthy People 2030 health literacy objectives as benchmarks.

Supporting research and evaluation efforts that enhance the evidence-base for Healthy People 2030's developmental and research health literacy objectives.

Creating programs and interventions for effective improvement strategies, measures, and implementation tools for improving personal and organizational health literacy.

Incorporating health literacy strategies into the training of public health and health care professionals, such as implementing the Health Literate Care Curriculum. 29

Working with health care partners and multisectoral partners to integrate health literacy principles into policy.

Engaging public and private partners in the work of increasing both personal and organizational health literacy.

Summary

Both personal and organizational health literacy can have a powerful effect on an individual's health. It can make the difference in understanding a diagnosis, treatment, or recommended lifestyle changes to lead active, healthy lives. The Healthy People 2030's revaluation of its health literacy definition builds on Healthy People's previous health literacy contributions to public health. The Healthy People 2030's 2 complementary health literacy definitions, which taken together constitutes health literacy, promise to continue Healthy People's positive influence on health and well-being in the United States.

A definition of individual health literacy maintains continuity with previous research and updates and enhances the language to be inclusive of public health. It will serve as the necessary foundation for developing measures, survey tools, and a core Healthy People 2030 objective to track progress toward reinstating a Healthy People core objective of improving population-level health literacy.

An organizational definition of health literacy reflects the field's recognition of organizations' responsibility to meet the needs of the public they serve. An increase in "health literate" organizations will be more likely to occur if a Healthy People 2030 core objective is established and measured and progress is tracked.

Together, the 2 health literacy definitions offer Healthy People 2030 users' measurable ways to track changes in the health literacy of the population and of organizations aligning their information and services with the health literacy skills of their clients. Given the centrality of health literacy to achieving Healthy People 2030 goals, these 2 definitions will help encourage the research, policies, and programs needed to eliminate health disparities, achieve health equity, and attain health literacy to improve the health and well-being of all.

Implications for Policy & Practice

The expanded definition can increase awareness of the role various organizations hold in ensuring that individuals can access, understand, and take action on the health information and services they provide.

With consensus on the Healthy People 2030 definition, public and private partners across sectors, including public health, health care, business, and education, can expand upon their approaches toward increasing health literacy for all.

The updated definition may also help support efforts to integrate health literacy principles into policy.

Footnotes

The Office of Disease Prevention and Health Promotion thanks the Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030, the Secretary's Advisory Committee's Health Literacy Subgroup members (Dushanka Kleinman, Rima Rudd, Cynthia Baur, and Don Rubin), and members of the Health Definition Committee, a subgroup of the Healthy People 2030 Health Communication and Health Information Technology Workgroup (The Office of the National Coordinator for Health Information Technology, the Centers for Disease Control and Prevention, the Office of Disease Prevention and Health Promotion, and the Agency for Healthcare Research and Quality). These colleagues contributed to and provided support for the development of the updated health literacy definition.

The authors declare no conflicts of interest.

Written work prepared by employees of the Federal Government as part of their official duties is, under the U.S. Copyright Act, a "work of the United States Government" for which copyright protection under Title 17 of the United States Code is not available. As such, copyright does not extend to the contributions of employees of the Federal Government.

References

2. US Department of Health & Human Services, Office of Disease Prevention and Health Promotion. Issue Briefs to Inform Development and Implementation of Healthy People 2030; Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030. Rockville, MD: US Department of Health & Human Services, Office of Disease Prevention and Health Promotion; 2018. [ Google Scholar]

3. Tuijnman A. The International Adult Literacy Survey (IALS). Results and Highlights From an International Perspective: IALS in Relation to Economies and Labour Markets. A Workshop on Literacy, Economy and Society. Calgary, Canada; 1996. [ Google Scholar]

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13. General authority of the Secretary (42 USC 300u) and was established as part of the "National Consumer Health Information and Health Promotion Act of 1976" (Public Law 94-317).

14. Ratzan SC, Parker RM. Introduction. In: Selden CR, Zorn M, Ratzan SC, Parker RM, eds. National Library of Medicine Current Bibliographies in Medicine: Health Literacy. CBM 2000-1. Bethesda, MD: National Institutes of Health, US Department of Health & Human Services; 2000. [ Google Scholar]

15. US Department of Health & Human Services, Office of Disease Prevention and Health Promotion. Communicating Health: Priorities and Strategies for Progress: Action Plans to Achieve the Health Communication Objectives in Healthy People 2010. Washington, DC: US Department of Health & Human Services, Office of Disease Prevention and Health Promotion; 2003:42. [ Google Scholar]

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Practice Full Report: Updating Health Literacy for Healthy People 2030: Defining Its Importance for a New Decade in Public Health

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Journal of Public Health Management and Practice Practice Full Report Stephanie Santana, MPH, Cindy Brach, MPP, Linda Harris, PhD, Emmeline Ochiai, MPH, Carter Blakey, BS, Frances Bevington, MA, Dushanka Kleinman, DDS, MScD, and Nico Pronk, PhD, MA, FASCM, FAWHP Healthy People 2030, the fifth iteration of the Healthy People initiative, provides science-based national health objectives with targets to improve the health and well-being of Americans.

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Health Literacy and Use and Trust in Health Information

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There is a need to investigate which health information sources are used and trusted by people with limited health literacy to help identify strategies for addressing knowledge gaps that can contribute to preventable illness. We examined whether health ...

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Journal of Ethics | American Medical Association

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Influences of Religion and Spirituality in Medicine

Before medical school, I studied theology at Harvard Divinity School and served as a chaplain-intern at Boston Children's Hospital. Those experiences shaped the way I approach medicine and patients today. In particular, I acquired a newfound appreciation for how hospital hallways are places where values intersect and where profound decisions can be shaped by individuals' religious and spiritual beliefs.

Today, clinical chaplaincy remains an underutilized resource in health care, as patient spirituality continues to be an area that clinicians do not discuss as often as they should. ¹ This finding is disappointing, given the potential benefits of integrating patient religion and spirituality into clinical practice by improving empathy, building trust, and understanding behaviors. In looking at the state of religiosity of America, a Pew Research Center report found that 70.6% of US adults identified as Christian in 2014 ²; the report also revealed trends toward religious diversity, with small increases from 2007 to 2014 in the percentage of the population identifying as Muslim and Hindu and a 6.7% increase in the unaffiliated or "nones," ² some of whom may identify as "spiritual but not religious." ³ Acknowledging the moral underpinnings (spiritual or religious) that drive certain care-seeking behaviors-from end-of-life care to contraception-is critical in achieving a more holistic medical practice. Moreover, awareness of our patients' spiritual or religious beliefs helps us to be more aware of our own motivations, as spirituality and religion are important components that shape behaviors of many clinicians.

Educators across the country have noted the need to incorporate resources into the curriculum to help medical trainees better understand their patients' spiritual backgrounds. In recognition of the role that spirituality plays in the health of people, Christina Puchalski founded the George Washington Institute for Spirituality and Health (GWish) in May 2001 with the aim of bringing increased attention to the spiritual needs of not only patients and families but also health care professionals. ⁴ In this issue, Aparna Sajja and Puchalski expand on the mission of GWish, writing about the importance of recognizing the role that spirituality plays in health and sharing curricular steps that Puchalski and her institution have taken to educate trainees about that role. This interplay between medical and spiritual practices is illustrated brilliantly by Ariana Ellis's drawing of a patient's hands: one holding pills and, the other, a rosary. And Karl Lorenzen's illustrations are aesthetic explorations of spiritually relevant features of embodiment -fear and suffering-that are also considered through the lens of the four principles: beneficence, nonmaleficence, respect for autonomy, and justice.

Of course, religion and spirituality are important not just to patients but also to clinicians. Respecting the background of medical trainees when navigating discussions of morally sensitive aspects of medicine can be uniquely challenging. Louise P. King and Alan Penzias collectively share their experiences in and strategies for discussing morally or spiritually laden topics with students, particularly conscientious objection to cases of contraception or abortion.

The complexity of teaching religion and spirituality in health care practice speaks to the fact that patient and clinician values can sometimes intersect in a way that leads to conflict and moral distress. ⁵ All three cases in this issue speak to that tension between patient and clinician. In the first case, a patient refuses postoperative pain medication prior to surgery to atone for some of his past sins. Benjamin W. Frush, John Brewer Eberly, Jr., and Farr A. Curlin respond to this case by distinguishing between the purpose of medicine as health and as a relief from suffering. The authors argue that clinicians can and should accommodate a spiritual response to suffering, as long as this accommodation does not undermine an ethical commitment to improving patient health. In a second case in which a patient asks her surgeon-an atheist-to pray with her before surgery, April R. Christensen, Tara E. Cook, and Robert M. Arnold offer communicative strategies for clinicians that address such requests in a respectful and supportive way, particularly when they don't share their patients' religious or spiritual views or are uncomfortable revealing their own. Jane Morris and Kavita Shah Arora respond to the final case, in which a physician employed at a Catholic health care organization prescribes contraception pills but wonders whether to code the prescription as acne medicine. The authors unpack the physician's conflicting duties to patient, employer, and state law, arguing that if she chooses not to prescribe contraception, she maintains a responsibility to transfer the patient and to notify future patients ahead of time of her inability to prescribe.

A shared thread in the first two cases is the role of the hospital chaplain. Chaplains are a valuable, yet underutilized, resource in situations in which spiritual or religious values create conflict or moral distress. ⁶ One possible reason for this underutilization is the assumption that all types of clergy-including the laity-can perform the same work as hospital chaplains. However, professional medical chaplains are trained in ways specific to the health care setting, orienting their services more to the needs of the patient rather than their own interpretation of religion or spirituality. ⁷ Susan Harris pulls from personal experiences to write about the unique role of hospital chaplains in mediating between patients' families and physicians when discussing goals of care, and in the podcast, Harris discusses specific strategies for mediating between these groups.

Finally, religion and spirituality encompass more than a single patient-clinician relationship. Important social movements and charitable organizations have drawn their inspiration from religion and spirituality. Medicine has a similarly rich history of partnership with faith-based initiatives, as many hospitals and service groups rely on the support of religious communities. ⁸ Nadia Islam and Shilpa Patel share their experiences and offer best practices in building partnerships with ethnic minority-serving religious institutions to improve the health of Asian immigrants and Muslim women in New York City and New Jersey.

Religion and spirituality will continue to influence health care on both patient and community levels. It is up to the medical community to appreciate this fact and educate trainees on religion and spirituality's role in health care. On a macro level, a better understanding of patient and community values can help scale up the impact of faith-based health initiatives and improve hospital policies and medical legislation. On an individual level, recognizing the roles of religion and spirituality in medicine can help clinicians approach their patients with more empathy and trust and strengthen team-based collaborations between clinicians and chaplains. Further studying the impact of religion and spirituality (and openly discussing it) can then help to clarify why clinicians may feel moral distress when their values conflict with their patients'-and how they can address it.

Citation

AMA J Ethics. 2018;20(7):E609-612.

DOI
10.1001/amajethics.2018.609.
Acknowledgements

I want to thank everyone who made this issue a reality-most importantly the authors, who contributed their time and effort to shed light on a neglected topic in medicine. I also wish to thank my mentor, Dr. Robert Truog, director of the Center for Bioethics at Harvard Medical School, for helping me in the planning stages of this issue. Finally, I would like to thank the editorial staff at the AMA Journal of Ethics, as well as my fellow theme issue editors, all of whom helped polish this issue into its final version.

The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.

Author Information

Danish Zaidi, MTS, MBE is a third-year medical student at Wake Forest School of Medicine in Winston-Salem, North Carolina. Previously, he earned his master of theological studies degree from Harvard Divinity School and served as a chaplain-intern at Boston Children's Hospital. He later completed his master of bioethics degree at Harvard Medical School.

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Influences of Religion and Spirituality in Medicine

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Influences of Religion and Spirituality in Medicine Before medical school, I studied theology at Harvard Divinity School and served as a chaplain-intern at Boston Children's Hospital. Those experiences shaped the way I approach medicine and patients today.

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Considering religion and spirituality in precision medicine

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In courtrooms, it's not the loudest voice that prevails. Opposing arguments are grounded in reason and evidence and they are put forward within strict guidelines for courtroom decorum. Each side tests the arguments of the other side, and a judge holds everyone to the same protocol and standards of appropriate behavior. Asking questions of each side is an integral part of the process. The adversarial system is no place for incivility. In fact, court proceedings are set up to promote effective civil discourse.

Put an X next to the actions and attitudes that are most important to you.

1. Be mindful of your own behavior. Notice how you internally are reacting/responding when others speak. Pay attention to how your words and your silence are impacting the experience for others in the group.

What are you doing to create a welcoming environment for differing opinions? Are you looking at each speaker and giving your full attention? Are you listening with an open mind - momentarily putting aside what you will say next?

Are you asking clarifying questions? Are you being careful not to take over the conversation by talking longer than others? Are you refraining from subtle, but disrespectful behavior or not paying attention when others speak?

2. Wait to be recognized by the moderator before speaking. This allows time - before you speak - for reflection on what the previous speaker(s) have said.

3. Don't interrupt or talk over someone else who is speaking, even when you are excited.

4. No side conversations. They are disrespectful to the speaker and distract listeners from the person who has the floor.

5. Listen for content in the statements of others, especially when you disagree. Listen for what the speakers are trying to communicate, even if they aren't expressing their points concisely.

6. Find common ground. Identify and call attention to areas of agreement.

7. Follow the direction of the discussion. Don't repeat what already has been said. Relate your comments to those of previous speakers.

8. Ask questions. Don't assume that you know what someone else means. Ask the speaker to help you understand perspectives different from your own.

9. Don't embarrass yourself or disrespect others by making demeaning or inappropriate comments, facial expressions, or gestures. No eye rolling, sighing, or checking out of the conversation.

10. Differentiate between facts and opinions. Both are valid when expressed appropriately.

What would you add?

Example of Student-Developed Civility Rules

How to engage in civil discourse:

1. Tell the truth, the whole truth, and nothing but the truth.

2. Moderate your tone, so that you don't sound aggressive.

3. Be conscious and mindful of your facial expressions.

4. Be attentive and considerate of your opponent's point of view:

Process what is being said

Give equal time to opposing opinions.

5. Don't repeat yourself. Use a variety of evidence.

How to interact respectfully with someone who fails to obey the agreed-upon rules of civility:

1. Respectfully ask for evidence that supports the statements made.

2. Stay calm and consider taking a break from the conversation.

3. Tell your opponent that you don't know how to interpret his/her facial expression.
Ask for help in understanding what they mean.

4. Ask for equal time, using a polite tone: "May I finish my point?"

5. Express understanding: "I understand," or "I hear you."

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Setting Ground Rules - Civil Discourse and Difficult Decisions

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In courtrooms, it's not the loudest voice that prevails. Opposing arguments are grounded in reason and evidence and they are put forward within strict guidelines for courtroom decorum. Each side tests the arguments of the other side, and a judge holds everyone to the same protocol and standards of appropriate behavior.

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Share responsibility for including all voices ...
Listen respectfully ...
Be open to changing your perspective ...
Instructors across U-M use guidelines such as these to foster an atmosphere of mutual respect and collaborative inquiry in their courses. Sometimes called 'ground rules,' community agreements, or participation norms (and there are several fuller examples below), such guidelines can be provided by an instructor or generated collaboratively with students. In any discipline, guidelines can support a series of inclusive teaching goals: they help clarify expectations, cultivate a sense of belonging among students, and facilitate students' ability to engage productively with one another across their differences.

On this page, we offer questions to consider when developing guidelines for your particular teaching setting, several examples of guidelines, and ideas about how to make use of guidelines over the course of the term.

Questions and Considerations

Before proposing specific guidelines or inviting students to participate in generating them, it's helpful to decide upon and clarify for students some key questions, including:

What types of learning interactions will be common in your course? (e.g., whole class discussion, small groups or pairs, long-term team projects, 'Socratic' question-answer led by the instructor, etc.)

If discussion is a key part of your pedagogy, what are your reasons for using it? What skills, capacities, or knowledge do you want students to learn or develop through discussion? (In their book Discussion as a Way of Teaching, Brookfield and Preskill identify four purposes of discussion, which you might find useful to consider: "(1) to help participants reach a more critically informed understanding about the topic or topics under consideration, (2) to enhance participants' self-awareness and their capacity for self-critique, (3) to foster an appreciation among participants for the diversity of opinion that invariably emerges when viewpoints are exchanged openly and honestly, and (4) to act as a catalyst to helping people take informed action in the world.")

What other goals would be useful for determining guidance for interactions in your particular learning context? (e.g., Are your students preparing to engage in particular professional or community contexts? Is your course focused on especially high-stakes topics that you're helping students navigate critical conversations about?)

What are the limits of guidelines? Explicit conversations about expectations, norms, and goals of classroom interactions can be an important resource for you and your students, providing common language and understandings that help shape a constructive learning environment. But such conversations--or the guidelines generated by them--will not prevent all challenges. It's important for you and students to maintain realistic expectations and understand that conflict, misunderstanding, or resistance may well arise in a learning setting even when the group has carefully considered the 'rules of engagement.' Guidelines can serve as a useful resource in navigating such challenges, but they won't always prevent them. (See these other pages for further ideas about facilitating high-stakes conversations and navigating 'hot moments.')

The sample guidelines below are offered as starting points in connection with these reflection questions. They include several guideline types: behavioral suggestions (e.g., don't interrupt), invitations to adopt particular attitudes (e.g., be open to changing your perspectives), prompts to reflect on one's own learning (e.g., strive to see your mistakes as part of the process). In all of these examples, we try to steer clear of some common pitfalls discussed by Sensoy and DiAngelo in their 2014 article, " Respect Differences? Challenging the Common Guidelines in Social Justice Education. " In their discussion of the particular teaching context of social justice education courses, these authors argue:

In practice, the common guidelines purported to be important to building the kind of classroom climate that can support the commitments above [i.e., skills of critical analysis, critical self-reflection, and analysis of relations of oppression and privilege] do not address the deeply patterned social and structural dynamics that are brought into the classroom itself. In other words, these guidelines [e.g., assume good intentions, everyone's opinion matters, speak from your own experience, or don't take things personally] can run counter to social justice pedagogical commitments. (p. 3)

The article goes on to explain how these sorts of guidelines can inadvertently mask differences in student positionalities, create privileged space for speech that reinforces systemic inequities (such as racism, classism, homophobia, and sexism), and demand that students who are targeted or marginalized by others' speech maintain a neutral stance or demeanor. The examples below deliberately avoid replicating those common guidelines, creating space to acknowledge the ways students' different relations to social power and privilege can affect interactions in the learning environment. (For more on this last topic, see our Overview of Inclusive Teaching.)

Sample Guidelines from CRLT

Many of these will be more useful for some disciplines, topics, and class settings than others. Which are most relevant for your specific teaching context? Additional examples, including some for specific disciplinary spaces, can be found here.

Share responsibility for including all voices in the conversation. If you tend to have a lot to say, make sure you leave sufficient space to hear from others. If you tend to stay quiet in group discussions, challenge yourself to contribute so others can learn from you.

Listen respectfully. Don't interrupt, turn to technology, or engage in private conversations while others are speaking. Use attentive, courteous body language. Comments that you make (whether asking for clarification, sharing critiques, or expanding on a point) should reflect that you have paid attention to the previous speakers' comments.

Be open to changing your perspectives based on what you learn from others. Try to explore new ideas and possibilities. Think critically about the factors that have shaped your perspectives. Seriously consider points-of-view that differ from your current thinking.

Understand that we are bound to make mistakes in this space, as anyone does when approaching complex tasks or learning new skills. Strive to see your mistakes and others' as valuable elements of the learning process.

Understand that your words have effects on others. Speak with care. If you learn that something you've said was experienced as disrespectful or marginalizing, listen carefully and try to understand that perspective. Learn how you can do better in the future.

Take pair work or small group work seriously. Remember that your peers' learning is partly dependent upon your engagement.

Understand that others will come to these discussions with different experiences from yours. Be careful about assumptions and generalizations you make based only on your own experience. Be open to hearing and learning from other perspectives.

Make an effort to get to know other students. Introduce yourself to students sitting near you. Refer to classmates by name and make eye contact with other students.

Understand that there are different approaches to solving problems. If you are uncertain about someone else's approach, ask a question to explore areas of uncertainty. Listen respectfully to how and why the approach could work.

Sample Guidelines for Social Justice Education Contexts (Sensoy & Diangelo p. 8)
References

Strive for intellectual humility. Be willing to grapple with challenging ideas.

Differentiate between opinion--which everyone has--and informed knowledge, which comes from sustained experience, study, and practice. Hold your opinions lightly and with humility.

Let go of personal anecdotal evidence and look at broader group-level patterns.

Notice your own defensive reactions and attempt to use these reactions as entry points for gaining deeper self-knowledge, rather than as a rationale for closing off.

Recognize how your own social positionality (e.g., race, class, gender, sexuality, ability) informs your perspectives and reactions to your instructor and those whose work you study in the course.

Differentiate between safety and comfort. Accept discomfort as necessary for social justice growth.

Identify where your learning edge is and push it. For example, whenever you think, I already know this, ask yourself, How can I take this deeper? Or, How am I applying in practice what I already know?

Using Guidelines Over Time

For guidelines to be most useful in your class, it is important to continue bringing attention to them after the first day. Here are some practices that instructors can use to leverage guidelines as a resource throughout the semester:

For the first few weeks, post the list in class where everyone can see it. Maybe ask a student to read it aloud occasionally, as a whole-group reminder of your collective agreements.

Type up the class's list and distribute the hard copy, or include it as a page on your Canvas site. (This can be a complement to the first suggestion, especially important in case you have visually impaired students in your class).

Revisit the guidelines in class after several class sessions to elicit revisions or additional suggestions.

Use at midterm and/or at the semester's end as a point of reference for students to self-assess their participation (answering, e.g., 'How have I contributed positively to the sort of learning environment described in our discussion guidelines?' Or 'What have my strengths been as a contributor? Where can I grow?') and/or to provide feedback about their sense of the class interactions and learning environment (answering, e.g., 'How well have we as a class been abiding by these agreements?').

Use in strategic moments where interactions might feel more fraught: e.g., remind students of your agreements if tensions arise or you're moving into a potentially high-stakes conversation.

Use as a starting point for a guidelines conversation the next time you teach the class (e.g., 'Here's what my previous students suggested. What do you appreciate here, and what might you want to add or change?').

Brookfield, S. D., & Preskill, S. (2012). Discussion as a Way of Teaching: Tools and Techniques for Democratic Classrooms. Wiley.

Sensoy, Ö., & DiAngelo, A. (2014). Respect Differences? Challenging the Common Guidelines in Social Justice Education. Democracy and Education, 22(2), Article 1. Available at: https://democracyeducationjournal.org/home/vol22/iss2/1

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Share responsibility for including all voices ... Listen respectfully ... Be open to changing your perspective ... Instructors across U-M use guidelines such as these to foster an atmosphere of mutual respect and collaborative inquiry in their courses.