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Implications for nursing practice, research, AND patient care are many. The most important aspect of patients becoming more engaged is patient involvement in their own care. Patients, with access to their health records and actively participating in their own health journey will assist the nurse with patient education regarding new disease processes and changes to medication regiments and promoting overall positive health practices. By improving communication efforts, it offers increased accessibility as well as improve patient outcomes.  Providers should also start fostering real relationships with patients and encouraging open collaboration between practitioner and patient.

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Patient Engagement and connected health Topic summary Presentation

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Patient Engagement and connected health Topic summary Presentation

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Centers for Medicare and Medicaid Services

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Centers for Medicare and Medicaid Services

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Why is Connected Care Important?

Between doctor visits, taking the right medications at the right times, and following advice from different health care professionals, managing chronic conditions like diabetes or arthritis can be overwhelming.

If you have Medicare, ask your doctor about chronic care management (CCM) services to get connected care, so you can spend less time managing your care and more time doing what you love.

Chronic care management services may include:

At least 20 minutes a month of CCM services

Personalized assistance from a dedicated health care professional who will work with you to create a care plan

Coordination of care between your pharmacy, specialists, testing centers, hospitals, and more

24/7 emergency access to a health care professional

Expert assistance with setting and meeting your health goals

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Kootenai Health is seeing improvements in patient education, engagement and satisfaction rates since replacing dry-erase boards with customizable, digital whiteboards. GetWellNetwork's Interactive Patient Whiteboard™ is helping patients take a more active role in their health care and strengthening a culture of engagement throughout the hospital system.

Challenge

The full-service medical center wanted an interactive communication solution that would help strengthen patient-caregiver connection, communicate information in real time, and enhance the patient-centered experience.

For years, communication with patients using traditional whiteboards was challenging. Information was often incomplete, inconsistent, illegible or not current. Medical record documentation had to be completed separately. Wanting to refocus, they set out to find a standardized interactive tool concentrated on the patient experience.

Solution

GetWellNetwork's dynamic digital whiteboard. Available through GetWell Inpatient™, it turns the in-room TV into an easy-to-navigate, centralized communication hub that:

Facilitates meaningful conversations for patients and families who can review care team updates, record their own notes and questions and set and track goals

Provides real-time visibility with access to vital information, such as the care plan, medications and daily schedule of tests and procedures

Engages patients & families in care through a personalized dashboard designed to involve, inform and empower active care management

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Kootenai Health connects with interactive whiteboards

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Kootenai Health is seeing improvements in patient education, engagement and satisfaction rates since replacing dry-erase boards with customizable, digital whiteboards. GetWellNetwork's Interactive Patient Whiteboard™ is helping patients take a more active role in their health care and strengthening a culture of engagement throughout the hospital system.

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Big Hero 6 (2014) - Hello I Am Baymax Scene (4/10) | Movieclips

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Are healthcare organizations keeping up with consumer demands?

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Are healthcare organizations keeping up with consumer demands?

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A new report from Kaufman Hall, 2019 State of Consumerism in Healthcare: The Bar is Rising, finds that while top organizations have kept pace in recent years, underperforming organizations are falling even further behind.

The Kaufman Hall Healthcare Consumerism Index ranks organizations by how well they are meeting rising consumer demands, concentrating on the areas of consumer access, experience, pricing, and infrastructure. Those organizations are then broken up into different tiers.

For the second year in a row, only 8% of organizations ranked as Tier 1, while only a quarter ranked in Tier 2.

However, there was a much larger shift in the lower tiers. In 2018, 52% of organizations were in Tier 3, compared to this year's 39%. Most of that change in Tier 3 can be explained by the increase in Tier 4 organizations: from 17% in 2018 to 29% in 2019.
Related article: Six Healthcare Technologies Coming in the Next 10 Years
According to the report, most of that dropoff can be explained by lower-tiered organizations still relying on older models: traditional, physical access points. While many organizations offer widespread urgent care (61%), ambulatory surgery centers (51%), and free-standing diagnostics facilities (41%), only around half had retail clinics.

"Many hospitals and health systems remain focused on a brick-and-mortar model of offering consumers access to their providers," said Dan Clarin, senior vice president, strategic and financial planning at Kaufman Hall in a release. "Consumers are accustomed to the convenience of being able to access the goods and services they need on their smartphones, tablets, and computers. Healthcare organizations that want to connect with new or potential consumers should adapt their delivery models to remain relevant in an increasingly digital environment."

Another area of needed growth, according to the report, is digital patient interaction. Only about a third of organizations offer widespread online self-scheduling for existing patients, while only 16% offered those services for new patients. Sixty-six percent of organizations offer few to no opportunities for real-time patient feedback, while half do not offer real-time updates on office wait times and 38% only offer those updates on a limited basis.

That slow growth and adoption of patient-centric technologies is contrary to executive's attitudes to technology-while only 11% said they had best-in-class customer experience capabilities in their organizations, 81% said improving the patient experience is a high priority for their organizations.

"As consumers continue to gain greater digital access to information and services in other areas of their lives, they expect the same of their healthcare experience," said Clarin. "Providers must introduce digital best practices as part of their overall customer experience strategies, and begin to think in terms of 'delighting' rather than merely 'satisfying' consumers going forward. Doing so will require substantial investments in infrastructure and training."

Nicholas Hamm is an editor with Managed Healthcare Executive

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Are Healthcare Organizations Keeping Up with Consumer Demands?

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A new report from Kaufman Hall, 2019 State of Consumerism in Healthcare: The Bar is Rising, finds that while top organizations have kept pace in recent years, underperforming organizations are falling even further behind. The Kaufman Hall Healthcare Consumerism Index ranks organizations by how well they are meeting rising consumer demands, concentrating on the areas of consumer access, experience, pricing, and infrastructure.

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1) How do we provide the right tools to the right people to provide the right care?
2) As a provider: how connected and engaged to your patients do you feel?
As a patient: How connected and engaged do you feel toward your healthcare?
What are similarities that make it the same experience?

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The Use of the Internet and the Affect on Accessibility For Patients

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The Use of the Internet and the Affect on Accessibility For Patients

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The internet, or “world wide web,” has the ability to provide quick, accessible service to information at your fingertips. From anywhere in the world, all you have to have is a computer with internet access and you will gain access to people, information, materials, and research without limitations due to your location despite how remote it may be.

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The aim of empowering patients is to help them develop self-awareness, self-care and promote the understanding that patients can be equal partners in their healthcare decisions. Patient empowerment puts patients in the driver's seat of healthcare services so they are able to receive the maximum benefits from it.

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The internet is growing exponentially right now, and there is no end in sight. The "World Wide Web" has the ability to provide quality health and medical information.
It is also uber convenient.

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Healthy People 2020 - Health Literacy

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The Healthy People 2020 Social Determinants of Health topic area is organized into 5 place-based domains:

1. Economic Stability

2. Education

3. Health and Health Care

4. Neighborhood and Built Environment

5. Social and Community Context

Health Literacy is a key issue in the Health and Health Care domain.

The U.S. Department of Health and Human Services (HHS) defines health literacy as "the degree to which individuals have the capacity to obtain, process, and understand basic health information needed to make appropriate health decisions."Adequate health literacy may include being able to read and comprehend essential health-related materials (e.g., prescription bottles, appointment slips, etc.). Adequate health literacy may increase a person's capacity to take responsibility for their health and their family's health. However, health literacy is not just the result of individual capacities but also the health-literacy related demands and complexities of the health care system. For example, individuals with low literacy may not be able to understand prescription labels-but an organization that values health literacy makes it a priority to implement systems and interventions such as visual aids and counseling that increase understanding and thereby advance patient safety.

Low overall literacy may impact health literacy; however, the relationship between them is complex. For example, an individual may have high overall literacy and still have low health literacy. Low or limited health literacy skills are more prevalent among certain population groups and may be linked to many poor health outcomes. Health literacy has the potential to impact a broad array of functional skills that are required to make health decisions in various settings. Although there are many ways in which health literacy may impact health and health outcomes, this summary focuses on health literacy related to reading and comprehension of essential health-related materials.

A number of factors impact health literacy including a patient's receipt of appropriate written health communication materials, ability to accurately interpret written health-related information, and communication with providers. When patients receive written health communication materials that don't match their reading level, patient education is not effective. Additionally, when patients have low overall literacy skills but high verbal fluency, their verbal fluency can mask their inability to interpret written information. Potential communication barriers between patients and health care providers created by low health literacy may lead to a variety of negative health outcomes for the patient. For example, such communication barriers have been associated with patients being more likely to be hospitalized.

The impact of health literacy on skills needed to make health-related decisions may affect a patient's adherence to a treatment regimen (e.g., medication), which may decrease its benefits. Patients with low health literacy also tend to use the emergency department more often and are more likely to return to the emergency department after 2 weeks. One systematic review found low literacy (used as a proxy for health literacy) may impact parent/caregiver behavior (e.g., medication dosing, duration of breastfeeding). The study also found some evidence of an impact of parents' low literacy on children's health outcomes (e.g., depressive symptoms, persistent asthma).

A number of factors may influence an individual's health literacy, including living in poverty, education, race/ethnicity, age, and disability. Adults living below the poverty level have lower health literacy than adults living above the poverty level. Certain characteristics influenced by poverty, including insurance status, may impact health literacy more than other factors. For example, uninsured and publicly insured (e.g., Medicaid) individuals are at higher risk of having low health literacy. Studies have found that older adult Medicare beneficiaries with low health literacy have higher medical costs, increased ER visits and hospital admissions, and decreased access to health care. Education may also impact health literacy. For example, in a nationally representative sample, almost half of adults who did not graduate from high school had low health literacy.

Some of the greatest disparities in health literacy occur among racial and ethnic minority groups from different cultural backgrounds and those who do not speak English as a first language. Results from the National Assessment of Adult Literacy demonstrated that Hispanic adults have the lowest average health literacy scores of all racial/ethnic groups, followed by black and then American Indian/Alaska Native adults. People with low health literacy and limited English proficiency are twice as likely as individuals without these barriers to report poor health status. One study found that 74% of Spanish-speaking patients have less-than-adequate health literacy as compared to 7% of English-speaking patients. Cultural beliefs may also impact communication between patients and providers and affect a patient's ability to follow a physician's instructions.

Health literacy challenges may impact older adults more than other age groups. On average, adults age 65 and older have lower health literacy than adults under the age of 65. Low health literacy among older adults is associated with increased reports of poor physical functioning, pain, limitations of daily activities, poor mental health status

Improvements in health practice that address low health literacy are needed to reduce disparities in health status. As limited health literacy is common and may be difficult to recognize, "experts recommend that practices assume all patients and caregivers may have difficulty comprehending health information and should communicate in ways that anyone can understand." Examples include: simplifying communication; confirming comprehension for all patients to minimize risk of miscommunication; making the health care system easier to navigate; and supporting patient's efforts to improve their health.

Additional research is needed to increase the evidence base for what works to improve the effects of health literacy on health outcomes and disparities. This additional evidence will facilitate public health efforts to address health literacy as a social determinant of health.

Disclaimer: This summary of the literature on health literacy as a social determinant of health is a narrowly defined review that may not address all dimensions of the issue. i, ii Please keep in mind that the summary is likely to evolve as new evidence emerges or as additional research is conducted.

Endnotes

i Terminology used in the summary is consistent with the respective references. As a result, there may be variability in the use of terms, for example, black versus African American.

ii The term minority, when used in a summary, refers to racial/ethnic minority, unless otherwise specified.

References

1 U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. National action plan to improve health literacy. Washington (DC): Author; 2010.

2 Ratzan SC, Parker RM. Introduction. In: Selden CR, Zorn M, Ratzan SC, Parker RM, editors. National Library of Medicine current bibliographies in medicine: health literacy. Bethesda (MD): National Institutes of Health, U.S. Department of Health and Human Services; 2000. NLM Pub. No: CBM 2000-1.

3 Baker DW. The meaning and the measure of health literacy. J Gen Intern Med. 2006 21(8), 878-83.

4 Health literacy: report of the Council on Scientific Affairs. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. JAMA. 1999;281(6):552-57.

5 Sørensen K, Van den Broucke S, Fullam J, Doyle G, Pelikan J, Slonska Z, Brand H. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health, 2012;12(1):1.

6 McQueen DV, Kickbusch I, Potvin L, Pelikan JM, Balbo L, Abel T. Health and modernity: the role of theory in health promotion. New York: Springer Science & Business Media; 2007.

7 Brach C. Keller D, Hernandez LM, Baur C, Parker R, Dreyer B et al. Ten attributes of health literate health care organizations. Washington (DC): National Academy of Sciences; June 2012. http://nam.edu/wp-content/uploads/2015/06/BPH_Ten_HLit_Attributes.pdf

8 Rudd R. Objective 11-2: Improvement of health literacy. In: Communicating health: priorities and strategies for progress. Washington (DC): U.S. Department of Health and Human Services; 2003.

9 Easton P, Entwistle VA, Williams B. Health in the 'hidden population' of people with low literacy. A systematic review of the literature. BMC Public Health. 2010;10:459. doi: 10.1186/1471-2458-10-459.

10 Rudd RE. Health literacy skills of U.S. adults. Am J Health Behav. 2007;31(Suppl 1):S8-18.

11 Ngoh LN. Health literacy: A barrier to pharmacist-patient communication and medication adherence. J Am Pharm Assoc. 2009;49(5):E132-49. doi: 10.1331/JAPhA.2009.07075.

12 Buck ML. Providing patients with written medication information. Ann Pharmacother. 1998;32(9): 962-69.

13 Nelson AR, Stith AY, Smedley, BD, editors. Unequal treatment: confronting racial and ethnic disparities in health care. Washington (DC): National Academies Press; 2002.

14 Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM, Green D, Peel J. Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. American J Public Health. 2002;92(8):1278-83.

15 Baker DW, Parker RM, Williams MV, Clark WS. Health literacy and the risk of hospital admission. Journal General Intern Med. 1998:13(12):791-98.

16 Flores G. Language barriers to health care in the United States. N Engl J Med. 2006;355 :229-31

17 Pignone MP, DeWalt DA. Literacy and health outcomes: is adherence the missing link? J Gen Intern Med. 2006;21:896-7

18 Poss J. Developing a new model for cross-cultural research: synthesizing the Health Belief Model and the Theory of Reasoned Action. ANS Adv Nurs Sci. 2001;23:1-15

19 Becker M, Maiman L. Sociobehavioral determinants of compliance with health and medical care recommendations. Med Care. 1975;13(1):10-24.

20 Wroth TH, Pathman DE. Primary medication adherence in a rural population: the role of the patient-physician relationship and satisfaction with care. J Am Board Fam Med. 2006;19:478-86.

21 Griffey RT, Kennedy SK, D'Agostino McGowan L, Goodman M, Kaphingst KA. Is low health literacy associated with increased emergency department utilization and recidivism? Acad Emerg Med. 2014;21(10):1109-15. doi: 10.1111/acem.12476.

22 Yin HS, Dreyer BP, Foltin G, van Schaick L, Mendelsohn AL. Association of low care-giver health literacy with reported use of nonstandardized dosing instruments and lack of knowledge of weight-based dosing. Ambul Pediatr. 2007;7(4):292-298.

23 Kaufman H. Skipper B, Small L, Terry T, McGrew M. Effect of literacy on breast-feeding outcomes. South Med J. 2001;94(3):293-296.

24 Sleath BL, Jackson E, Thomas KC, et al. Literacy and perceived barriers to medication taking among homeless mothers and their children. Am J Health Syst Pharm. 2006; 63(4): 346-351

25 DeWalt DA, Hink A. Health literacy and child health outcomes: a systematic review of the literature. Pediatrics. 2009;124 Suppl 3:S265-74. doi: 10.1542/peds.2009-1162B

26 DeWalt DA, Dilling MH, Rosenthal MS, Pignone MP. Low parental literacy is associated with worse asthma care measures in children. Ambul Pediatr. 2007;7(1):25-31.

27 Kutner M, Greenburg E, Jin Y, Paulsen C. The health literacy of America's adults: results from the 2003 national assessment of adult literacy. National Center for Education Statistics; 2006. Report No.: NCES 2006-483.

28 Howard DH, Gazmararian J, Parker RM. The impact of low health literacy on the medical costs of Medicare managed care enrollees. Am J Med. 2005;118(4):371-77.

29 Cho YI, Lee SY, Arozullah AM, Crittenden KS. Effects of health literacy on health status and health service utilization amongst the elderly. Soc Sci Med. 2008;66(8):1809-16.

30 Sudore RL, Mehta KM, Simonsick EM, Harris TB, Newman AB, Satterfield S, et al. Limited literacy in older people and disparities in health and healthcare access. J Am Geriatr Soc. 2006;54(5):770-76.

31 Sentell T, Braun KL. Low health literacy, limited English proficiency, and health status in Asians, Latinos, and other racial/ethnic groups in California. J Health Commun. 2012;17 Suppl 3:82-99. doi: 10.1080/10810730.2012.712621.

32 Brice JH, Travers D, Cowden CS, Young MD, Sanhueza A, Dunston Y. Health literacy among Spanish-speaking patients in the emergency department. J Natl Med Assoc. 2008;100(11):1326-32.

33 Shaw SJ, Huebner C, Armin J, Orzech K, Vivian J. The role of culture in health literacy and chronic disease screening and management. J Immigr Minor Health. 2009;11(6):460-67. doi: 10.1007/s10903-008-9135-5.

34 Wolf MS, Feinglass J, Thompson J, Baker DW. In search of 'low health literacy': threshold vs. gradient effect of literacy on health status and mortality. Social Sci Med. 2010;70(9): 1335-41. doi: 10.1016/j.socscimed.2009.12.013.

35 Wolf MS, Gazmararian JA, Baker DW. Health literacy and functional health status among older adults. Arch Intern Med. 2005;165(17):1946-52. doi: 10.1001/archinte.165.17.1946.

36 Baker, D. W., Wolf, M. S., Feinglass, J., Thompson, J. A., Gazmararian, J. A., & Huang, J. (2007). Health literacy and mortality among elderly persons. Arch Intern Med, 167(14), 1503-1509. doi: 10.1001/archinte.167.14.1503

37 Brega AG, Barnard J, Mabachi NM, Weiss BD, DeWalt DA, Brach C, Cifuentes M, Albright K, West, DR. AHRQ Health Literacy Universal Precautions Toolkit, Second Edition. (Prepared by Colorado Health Outcomes Program, University of Colorado Anschutz Medical Campus under Contract No. HHSA290200710008, TO#10.) AHRQ Publication No. 15-0023-EF. Rockville, MD. Agency for Healthcare Research and Quality. January 2015. https://www.ahrq.gov/sites/default/files/wysiwyg/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/healthlittoolkit2.pdf

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The Healthy People 2020 Social Determinants of Health topic area is organized into 5 place-based domains: Economic Stability Education Health and Health Care Neighborhood and Built Environment Social and Community Context Health Literacy is a key issue in the Health and Health Care domain. The U.S.

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Connected Health solutions support patient engagement

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Connected Health solutions support patient engagement

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Promoting Health in School-Aged Children

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Promoting Health in School-Aged Children

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Healthy Eating: An introduction for children aged 5-11

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Health Behaviour in School-aged Children (HBSC)

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Supporting Use of the Internet for Health Education 

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Supporting Use of the Internet for Health Education 

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“Connected health will provide a way for patients to be more engaged in their health. ... Patient portals improve patient access to individual health information and telehealth promotes more timely care while mobile applications and secure messaging tools give patients access to providers in real-time”

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“Connected health will provide a way for patients to be more engaged in their health. ... Patient portals improve patient access to individual health information and telehealth promotes more timely care while mobile applications and secure messaging tools give patients access to providers in real-time”

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(PatientEngagementHIT, 2020)

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What is Patient Engagement? | Benefits, Strategies & Questions | Healthgrades

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Patient engagement involves integrating patients into their own care to help improve health outcomes, drive better patient care, and achieve lower costs. Learn the benefits of patient engagement in healthcare and strategies to improve it.

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Healthcare Organization Approach to Engagement

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Healthcare Organization Approach to Engagement

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The term "patient empowerment" is among the top buzzwords in health care circles, but as with many buzzwords, they can mean different things to different people. The term is most often used to emphasize the value of having patients assert greater control over their health and health care. WHO defines empowerment as "a process through which people gain greater control over decisions and actions affecting their health" (WHO 1998). This shift is due in large part to the use of technology that facilitates increased patient access to information via the Internet, peer-to-peer sharing, consumer health devices, and mobile apps.

In a recent Twitter chat, I set out to explore what it means to be an empowered patient today. The global participation of those who shared their views on the topic shows that patient empowerment is something of universal interest.

Seven Essential Components of Patient Empowerment

1. Information

Information is fundamental to the process of patient empowerment. Rare disease advocate and parent, Anne Lawlor (@22Q11_Ireland) believes that "an informed educated parent is an empowered one." Patients make the best decisions when armed with the right information. To make genuinely informed decisions about our treatment we must have access to the relevant information needed to make those decisions. "Being informed is key to empowerment for me," says specialist palliative care social worker, Deirdre McKenna (@KennaDeirdre). "Accurate information, clearly communicated and an available space to discuss and explore options and choices."

Research shows that access to the right information, at the right time, delivered in the right way, leads to an increase in a patient's desire and ability to take a more active role in decision-making. Open and transparent communication and access to a patient's own medical records is a key driver of patient empowerment. Medical Director and Consultant Surgeon, Dermot O'Riordan (@dermotor) believes to truly empower patients "we should be aiming for the "Open Notes" principles of default sharing of all documents." As patient advocate and CEO of Medistori Personal Health Record, Olive O'Connor (@MediStori) points out, "the patient is at the very core of every single service they use - they know everything there is to know about themselves, in the home and outside of it. Yet patient records are not kept with them!"

The OpenNotes initiative began in 2010 as a year-long demonstration project, with 105 primary care physicians at three diverse U.S. health care centers inviting 20,000 patients to read visit notes online through patient portals. Findings from the study suggest that shared notes may improve communication, safety, and patient-doctor relationships, and may help patients become more actively involved with their health and health care. Evidence also shows a sixty percent improvement in the patient's ability to adhere to medications, a major problem with managing chronic pain conditions. What is key to the discussion on patient empowerment is that this initiative "demonstrates how a simple intervention can have an enormous impact, even absent advanced technology" (my emphasis).

2. Health Literacy

While access to information is a key driver of patient information, health literacy is defined as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." ( National Library of Medicine). Health literacy should come before digital literacy. "Health literacy is crucial," says healthcare analyst, Matthew Loxton (@mloxton), "and you cannot get empowerment without health literacy." Soo Hun (@soo_cchsc), Programme Manager at the Centre for Connected Health and Social Care, believes "digital is a key aspect but health literacy, even basic literacy is a must. Not all things digital requires tech know-how but all health information requires basic literacy. An app for meds reminder is no use if a patient lacks understanding of why medication is needed in the first place or why they need to be taken promptly. We spend too little time transferring knowledge to patients."

This transfer of knowledge is crucial to the empowerment process, according to Olive O'Connor. "At the first point of contact with the patient," she says, "education on how, what, why, where and when in relation to a condition or medication should be talked through fully. All other tools (digital, leaflets etc.) should come after the conversation which is key to empowerment."

3. Digital Literacy

Cornell University defines digital literacy as "the ability to find, evaluate, utilize, share, and create content using information technologies and the Internet." It's interesting to note that opinions vary on whether digital literacy is essential to patient empowerment. RN turned patient advocate and health activist, Kayoko Ky Corbet (@kkcorbet) doesn't believe that "digital literacy is an absolute requirement, but the ability to find accurate relevant information, and understand the information is." Breast cancer advocate, Jennifer (@vitalfrequencis) agrees that "digital literacy is not fundamental and should not be part of the equation. Empowerment needs to be across all socioeconomic groups. Otherwise...a whole bunch of patients may never be empowered."

Dermot O'Riordan is convinced that "whilst it sounds nice to say that digital is not 'necessary' for patient empowerment, in practice it is going to be pretty tough to do it properly/completely without digital." Transplant recipient and rare disease patient, Carol McCullough (@Imonlyslightly ) also believes "digital literacy strengthens the empowerment process." She too points to "access to your medical information online" as a key component of the empowerment process. "Knowing your personal medical data is strength, as is education about your illness," she says.

Maternity campaigner, SeánaTalbot (@SeanaTalbot) believes that "those with long-term conditions and access to technology have a better chance of accessing information and support." Indeed many patients have found in the online world of peer-to-peer healthcare an environment in which they are supported to become a more empowered participant in their healthcare. As I look back on my own empowerment journey, my progress was advanced step-by-step by learning more about my disease initially from doctors, then through Internet searches, and most helpful of all through patient peers online. Finding and being part of a patient community can be an important step on the path to empowerment.

Self-efficacy, as it relates to healthcare, is belief in your ability to effect change in outcomes so that you can achieve your personal health goals. The patient empowerment definition which comes to us from the European Patient Forum describes empowerment as a process that "helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important."

Developing a sense of personal control over your health is in itself empowering. The empowered patient is confident in their ability to manage their condition. When unsure about where to go or what to do next they will feel confident to ask questions of the healthcare professionals providing their care. This confidence comes easier to some than others, and even the most confident may need guidance from their doctors in managing their disease. Endocrinologist, Iris Thiele Isip Tan, MD (@endocrine_witch) points out that "some of my patients are surprised when I teach them how to adjust/titrate insulin doses. Apparently not all MDs 'allow' this. Some need handholding because they get anxious about the responsibility."

Digital leader and physiotherapist, Linda Vernon (@VernonLinda), believes "for authentic patient engagement to occur, we need to establish what the patient brings to the table, something akin to an individual, personal take on Asset-Based Community Development - perhaps we could think of it as Asset-Based Personal Development, supporting the patient to tap into their own internal, community or environmental resources to improve their health and wellbeing. Engaging patients should be as much about exploring what they can do for themselves and to help the health and care system, as what we professionals can offer to the patient."

5. Mutual Respect

The healthcare professional is the most important contact point for the patient and the system and (dis)empowerment often manifests in the patient/professional relationship. At the heart of the empowerment approach is seeing the patient-professional relationship as a partnership of equals. Carol McCullough describes it as a reciprocal process of "mutual respect for what each person knows and being allowed to make informed choices. It is not about command and control."

This is a partnership approach that seeks to balance clinician expertise with patient preference. It recognizes that while healthcare professionals are the experts in their knowledge of a disease, patients are the experts by experience. The empowerment process is about sharing both knowledge and experience to set new goals and learn with and from each other. Dr Kit Byatt (@Laconic_doc) agrees. "Many patients are experts", he says, "especially rare disease patients. I've learned from many in my career."

Building better relationships and seeing the patient as more than 'just a patient' was a recurring theme in the Twitter chat. Elena Vaughan (@StigmaStudyIE), who is researching the impact of HIV-related stigma in Ireland, believes that "an empowered patient is treated with respect, involved in shared decision-making regrading care and treatment, and is not patronised. For people with chronic conditions, effective communication, continuity of care and establishing a relationship of trust is very important." Sometimes, as ME blogger and patient advocate, Sally Burch (@KeelaToo) points out, "not all patients are lacking confidence to speak. The problem is being heard."

Patient and community advocate, Triona Murphy (@Murpht01) advises doctors to get to know your patients as individuals. "Know your patient!!...and their family," she says. "No one size fits all! BUT there was/is still a culture of the 'person' stops at the door of the hospital and that person is now a patient.'" As antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) says, "I might be a patient but I am also a creative director by profession. No one recognises me on that level. They see me as an underdog."

6. Shared Decision Making

This partnership approach allows for Shared Decision-Making (SDM) - the conversation that happens between a patient and clinician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. There is ample research which suggests that health outcomes are better in patients who are more involved in decisions about their treatment.

In the SDM model, the clinician provides current, evidence-based information about treatment options, describing their risks and benefits, and the patient expresses his or her preferences and values. Matthew Loxton points to how seldom we have metrics to track whether patient goals are being met. "Yet this," he believes, "is THE most important part of quality."

7. A Facilitating Environment

Linda Vernon defines patient engagement as "activating the person's inner assets and supporting them to make the best use of them." Being supported is a key component of patient empowerment. Many patients would like to take more responsibility for their own health and care, given the opportunities and support to do so. Empowerment does not happen in a vacuum: it is a two-way process. The patient needs a counterpart in the health professional who welcomes the patient's involvement and knows how to create an enabling healthcare environment. Kayoko Ky Corbet states she became an independent patient advocate when she realized most doctors simply do not have the time (and often skills) to take this facilitating role and promote shared decision-making that patients desperately need. As Patient Critical Co-op (@PatientCritical) puts it, "if you have a patient who wants to advocate for themselves, and become informed, you also need a doctor that respects the patient's right to share decision making."

Is It Empowerment or Participation?

Not everyone likes to use the term "empowerment", as it implies that it is an authority given to someone to do something. "I balk at the idea that professionals can 'give' (usually on their terms) power to the powerless," says Alison Cameron (@allyc375). "We need to create conditions whereby people can "empower" themselves." Seána Talbot agrees that patient empowerment "doesn't mean 'giving' people power.' Rather it's about 'enabling' them to recognise and use their power."

Perhaps the term 'participation' (which is a more active state) is preferable? This distinction is important because empowerment cannot be imposed 'top down' (although it can be facilitated). Sharon Thompson (@sharontwriter) believes that "patients should not be pressurised or need to be in a position of 'power.' It should be automatic that a patient is central and key to their care. Patients are automatically empowered when they are respected as being people who are entitled to understand and know about their care."

Neither is patient empowerment about the patient taking full control or shifting responsibility to the patient. "If the empowerment amounts to abandonment", says Matthew Loxton, "then the patient's health goals are not being met. Patient empowerment should never be an excuse for abandoning or burdening the patient."

Rather, the empowerment approach, as defined by the European Patient Foundation (EPF) "aims to realise the vision of patients as 'co-producers' of health and as integral actors in the health system." Caregiver Reinhart Gauss (@ReinhartG) agrees that "patient advocates want to work with not against doctors - to share experiences and to grow in knowledge." Vanessa Carter is clear that "we still want our doctors, but they are not there 24/7 so patients need the right tools to make self-care possible."

Equally, it is about recognizing that there are degrees of involvement and not all patients wish to be 'empowered.' There is a spectrum of interest in wanting to assume an active role in care - from being passively receptive to fully engaged. It is up to the patients themselves to choose their own level of engagement. Pharmacist Chris Maguire (@chris_magz) sees this choice as the essence of empowerment. Patients "get to decide how much they want to look into things and take control. Or they want to be guided on the journey and have trust in their healthcare providers. But the key is that they decide the level of interaction and are not dictated to." Kayoko Ky Corbet agrees that "true patient empowerment should be about helping patients get involved at their highest potential or at the level they choose." However, she says "it's also important to keep the option of involvement open. Ideally patients should get opportunities to change their minds to participate in decision-making later."

Empowerment as an Ongoing Process

Empowerment is a non-binary, non-linear process. Your needs may change over time. You might feel empowered in a certain context, but disempowered in another. Healthcare communicator, Michi Endemann (@MichiEndemann) makes the distinction that "talking about empowerment as a healthy person is quite different than talking about it as a patient." As patient advocate, Rachel Lynch (@rachelmlynch) puts it, "it can be quite tiring being empowered when all you want to be is well." A sentiment echoed by Kathy Kastner (@KathyKastner), founder of Best Endings, who clarifies how "to me 'empowered' assumes I'm feeling physically and mentally up to the task of 'being engaged'. I've seen powerhouses who cannot bring themselves to take responsibility for their own health."

Mental health advocate and co-founder of #DepressionHurts, Norah (@TalentCoop) calls attention to the fragile nature of empowerment. "Even the strongest can quickly feel disempowered by a deterioration in health," she says. "Fear disempowers. Sometimes it's a case of 'can't' not 'won't.'"

For those who feel ready for a greater degree of participation in their healthcare (and that of their family and loved ones), Jennifer advises that "being willing to self-advocate, along with self-confidence, communication skills, compromise, research skills, and relationship building" are some of the key traits and skills you need to become an empowered patient. Terri Coutee (@6state), patient advocate and founder of DiepCjourney Foundation, adds that "empowered patients do their research, ask questions, go to appointments organized, and take a friend to help listen."

Barriers to Patient Empowerment and Overcoming Challenges

What are some of the current barriers to involving patients more in their care? Jennifer points to a "lack of adequate time during the doctor's visit (on both sides), language barriers, technology barriers, generation gaps, and cultural gaps." The solution? "All solved by building good relationships," says Jennifer.

Norah also calls attention to the technology barriers. "For older patients simple things like communication (hearing), or uninformed changes are extremely disempowering; as is over reliance on technology for a generation who may not have 'tech' understanding or access." Tim Delaney (@FrancosBruvva), Head of Pharmacy at a leading hospital in Ireland highlights the fact that "in acute hospitals we treat huge numbers of elderly people whose engagement with social media and new technology is lower. We need to design technology that meets their usability needs AND use whatever suits them best be it old tech or new." Soo Hun agrees that "the tech savvy few have quicker and better access to health information and therefore can have choice and autonomy. To reverse that we need to make technology ubiquitous and make health information and choice easily accessible."

Whilst Vanessa believes it should be "governmental policy to have digital resources in place, for example, disease specific websites / apps supported by health authorities," Kayoko believes it can start with "tech-savvy advocates (like me) who could help patients learn to use simple digital tools."

Matthew Loxton sees a core barrier to empowerment to be "the large knowledge/power gradients between patients and health care providers. Without access to their data, trustworthy sources of medical knowledge, and the power to execute their choices in achieving health goals, empowerment is an empty phrase." Triona Murphy echoes this systemic challenge by clarifying that "the whole system needs to understand the patient's right to be equal partners in their care. IF that is what the patient wants."

Sometimes the fear of being labelled a difficult patient can be a barrier to empowerment. "Some patients feel uncomfortable challenging the judgement or actions of their caregivers for the fear of being labelled as 'difficult', of offending staff and/or because of concerns of compromising their healthcare and safety," says Tim Delaney.

Final Thoughts

Not everyone wants to be empowered in making decisions about their care, and not every doctor wants to take the time. Some doctors use medical terminology which is incomprehensible to patients, while some patients have low health literacy skills or come from cultural backgrounds that lack a tradition of individuals making autonomous decisions. That said, Carol McCullough points out that while "not everyone may want to be empowered, for the health service to be sustainable, more people are going to have to take on more responsibility."

Medical Doctor and Chair of Technical Advisory Board, Pavilion Health, Dr Mary Ethna Black (@DrMaryBlack) points to the inevitability of the shift towards patient empowerment. "Empowerment is an inevitable shift that is happening anyway, "she says. "We cannot turn back the tide or turn off the internet."

Kayoko Ky Corbet agrees that we "must understand that patients making informed decisions is the ultimate way to reduce waste, pain and regrets in healthcare. It's also morally the right thing to do!" Patient Critical Co-op also believes in the moral imperative that "empowerment essentially means a group or society recognizing your right. Patient empowerment exists as an action patients can take to improve themselves, but the key to achieving that improvement is having a group, organization, or state enshrine and recognize those rights." In fact, the Alma Ata Declaration defined civic involvement in healthcare as both a right and a duty: "The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare." The Declaration highlights the collective dimension of empowerment and the importance of action towards change. By working together to think internationally and act nationally we can draw on each other's experiences so that as individuals and as a collective we can work towards better outcomes for all patients. To quote Terri Coutee, "When we gather our collective empowered voices, we feel a strong responsibility to give voice to others."
I would like to acknowledge the assistance of Dr Liam Farrell in facilitating the Twitter discussion on which this article is based.

2020 Update: Patient Empowerment Revisited: What Does It Truly Mean To Patients?

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What is Patient Empowerment | Benefits Of Patient Empowerment

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The term "patient empowerment" is among the top buzzwords in health care circles, but as with many buzzwords, they can mean different things to different people. The term is most often used to emphasize the value of having patients assert greater control over their health and health care.

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Healthcare Organization Approaches to Engagement

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Healthcare Organization Approaches to Engagement

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In June 2011, Alvin, a terminally ill patient with end-stage pulmonary fibrosis, was hospitalized for pneumonia. His doctor, a specialist in lung disease at a top academic medical center, gave Alvin 100 percent oxygen and powerful antibiotics and steroids, but his condition quickly deteriorated. Faced with the choice of intubation and a mechanical ventilator or palliative care, Alvin chose to forgo life support and spend his last days at home with his family. His family was given a prescription for morphine with little instruction on how to use it appropriately; when they tried to fill the prescription, several pharmacies refused. Despite the hospital's orders for oxygen to be sent home, Alvin's family found that the oxygen supplied was insufficient for his needs. The emergency medical technicians who took Alvin home offered only one solution-to bring him back to the hospital. Trying to honor his wishes, the family refused. Five hours after leaving the hospital, Alvin was in pain and struggling for breath. Since it was a Saturday evening, hospice personnel were off duty; Alvin's family had to arrange for a private-duty nurse to help them care for him in his final hours. After he passed away, a hospice nurse finally arrived, apologized, and instructed his family on how to dispose of the remaining vial of morphine correctly. Alvin's case highlights the critical importance of all members of the care team-family members, clinicians, and other health care providers-working together to overcome system complexity and poorly aligned incentives to ensure patient-centered care, as well as the ways in which the health care system falls short on this critical dimension (Winakur, 2012).

Clinicians and health care staff work tirelessly to care for their patients in an increasingly complex, inefficient, and stressful environment. However, the structure, incentives, and culture of the system in which they work are often-perhaps usually-poorly aligned to support their efforts to respond to patients' needs as their core priority. Recognizing the imperative to center on the patient, a learning health care system is one in which patients and their families are key drivers of the design and operation of the learning process. When patients, their families, other caregivers, and the public are full, active participants in care, health, the experience of care, and economic outcomes can be substantially improved.

Crossing the Quality Chasm underscores patient-centeredness as a core aim of the health care system, yet care often fails to meet this aim ( IOM, 2001). Despite the Quality Chasm's call to action more than a decade ago, patient-centered care still is not the norm, and users continue to find the health care system uncoordinated and stressful to navigate. As the complexity of the system continues to grow with advances in science ( Chapter 2), patient engagement takes on increased importance as a means of ensuring that patients can find the right care for their individual characteristics, needs, preferences, and circumstances.

In these complex situations, patients and clinicians both need to be involved for optimal care. Clinicians supply information and advice based on their scientific expertise in treatment and intervention options, along with potential outcomes. Patients, their families, and other caregivers bring personal knowledge on the suitability-or lack thereof-of different treatments for the patient's circumstances and preferences. Information from both sources is needed to select the right care option. It is important to note that patient-centered care does not mean simply agreeing to every patient request. Rather, it entails meaningful engagement on the options available in order to understand the patient and establish a dialogue between patient and clinician on the evidence and the decisions in play ( Epstein et al., 2010; Fowler et al., 2011). The provision of patient-centered care can be complex and time-consuming, and requires broad involvement of the patient, the family, and the care team to consider all of the issues affecting the patient's care.

This chapter explores the ways in which a learning health care system can fill some of the gaps in orienting and coordinating the U.S. health care system around people's needs. First, the chapter considers what is currently known about focusing the health care system on people's needs and preferences, sets forth a vision for how the system could be improved in this regard, and summarizes the benefits of moving toward that vision. The chapter then investigates how this knowledge can be applied at different levels of the health care system, from the patient care experience to the broader system. Next is a discussion of communities of care and how they can incorporate those stakeholders not normally included in the health care system. The chapter concludes with recommendations for realizing the vision of a health care system that engages patients, families, and communities. Throughout, the discussion highlights ways in which a learning health care system can better incorporate patients, families, and the public in managing health and health care.

CENTERING CARE ON PEOPLE'S NEEDS AND PREFERENCES

Informed and engaged patients, invested in their own health care as well as in the improvement of the broader health care system, are crucial to a learning system. Patients bring unique and important perspectives on their own care, on the experience in health care organizations, and on the coordination and cooperation among various elements of their care. Unfortunately, patients, their families and other caregivers, and the public all too often are not meaningfully engaged in care or as partners in its improvement. Moving to the vision of a system centered on people's needs and preferences has the potential to bring multiple benefits for patients, the health care system, and the nation.

Conclusion 7-1: Improved patient engagement is associated with better patient experience, health, and quality of life and better economic outcomes, yet patient and family participation in care decisions remains limited.
Related findings:

Patients often are insufficiently involved in care decisions. Fewer than half of patients receive clear information on the benefits and trade-offs of the treatments for their condition, and fewer than half are satisfied with their level of control in medical decision making (see also Chapter 2).

Patient-centered care has been correlated with better health care outcomes and quality of life, as well as other benefits. The use of patient-centered care in a primary care setting has been associated with reduced pain and discomfort, faster recovery in physical health, and improvements in emotional health.

If implemented properly, meaningful engagement of patients in their own care has the potential to reduce costs. For example, it has been reported that informed patients are up to 20 percent less likely than other patients to choose elective surgery.

ENGAGING PATIENTS AS ACTIVE PARTICIPANTS IN THEIR CARE

Patients and the public across many diverse demographic groups have shown a desire to become more involved in their care and more informed about their health ( Frosch et al., 2012; President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1982). For example, 80 percent of Internet users now seek health information online, making this the third most popular Internet activity ( Fox, 2011). After a doctor's appointment, individuals seek out information on diagnoses, tests, and prescriptions to learn more ( Diaz et al., 2002). While this online information is variable in quality and should be viewed with caution, this growing interest in health represents an opportunity to increase patients' involvement in their own care, in the care of their loved ones, and in the improvement of the overall system. It further highlights new roles for health professionals in partnering with patients to share reliable online sources of health information ( Alston and Paget, 2012). Moreover, the development of new models of care delivery, such as patient-centered medical homes, health homes, and accountable care organizations (ACOs), offers opportunities to incorporate patient engagement. This section explores patient engagement at multiple levels-from the personal relationship of patients with their health care providers, to patients' experience while being treated in a health care organization, to the interaction of patients with the broader system, to patients' management of their own care.

INTEGRATING HEALTH CARE AND THE HEALTH OF THE COMMUNITY

While patient engagement can help drive the U.S. health care system toward continuous learning and improvement, the value, quality, and care coordination challenges faced by the system cannot be met by any single platform, organization, or entity acting alone. Rather, communities and coalitions are needed to drive improvement.

Conclusion 7-2: Coordination and integration of patient services currently are poor. Improvement in this area will require strong and sustained avenues of communication and cooperation between and among clinical and community stewards of services.
Related findings:

Care often is poorly coordinated across different settings and providers. In one survey, roughly 25 percent of patients noted that a test had to be repeated because the results from another provider had not been shared (see also Chapter 3).

Inadequate, sometimes absent, continuity of care endangers patients. Almost one-fifth of hospitalized Medicare patients are rehospitalized within 30 days, often without seeing their primary care provider in the interim (see also Chapter 3).

Although results for care coordination programs are mixed, there are effective interventions for improving care transitions. For example, the Care Transitions Model has been shown to reduce readmissions by 17 percent and costs by 50 percent.

Comprehensive health care requires accounting for factors typically outside of the traditional health care system. Most determinants of health lie outside of health care, with health care accounting for only 10 to 20 percent of health prospects. Thus there is a clear need for close clinical-community coordination.

FRAMEWORK FOR ACHIEVING THE VISION

As discussed in this chapter, neither patients nor clinicians can perform their tasks alone. While clinicians supply their scientific expertise on the benefits and risks of different options, patients contribute their knowledge about the suitability of different options for their needs, goals, and circumstances. Both are necessary to providing the right care. Given that patient-centered care is not simply agreeing to every patient request, many tools are needed to communicate information, create partnerships, and improve decision-making models ( Maurer et al., 2012). Further, involving patients meaningfully at the organizational and system levels requires changes in organizational structures and measurement tools and an expanded focus on the patient in all aspects of care. Recommendation 4 highlights the broad aims that different stakeholder groups need to pursue if health care's focus on patients is to increase.

Recommendation 4: Patient-Centered Care

Involve patients and families in decisions regarding health and health care, tailored to fit their preferences. Patients and families should be given the opportunity to be fully engaged participants at all levels, including individual care decisions, health system learning and improvement activities, and community-based interventions to promote health.
Strategies for progress toward this goal:

Patients and families should expect to be offered full participation in their own care and health and encouraged to partner, according to their preference, with clinicians in fulfilling those expectations.

Clinicians should employ high-quality, reliable tools and skills for informed shared decision making with patients and families, tailored to clinical needs, patient goals, social circumstances, and the degree of control patients prefer.

Health care delivery organizations, including programs operated by the Department of Defense, the Veterans Health Administration, and Health Resources and Services Administration, should monitor and assess patient perspectives and use the insights thus gained to improve care processes; establish patient portals to facilitate data sharing and communication among clinicians, patients, and families; and make high-quality, reliable tools available for shared decision making with patients at different levels of health literacy.

The Agency for Healthcare Research and Quality, partnering with the Centers for Medicare & Medicaid Services, other payers, and stakeholder organizations, should support the development and testing of an accurate and reliable core set of measures of patient-centeredness for consistent use across the health care system.

The Centers for Medicare & Medicaid Services and other public and private payers should promote and measure patient-centered care through payment models, contracting policies, and public reporting programs.

Digital technology developers and health product innovators should develop tools to assist individuals in managing their health and health care, in addition to providing patient supports in new forms of communities.

Beyond patient-centered care, this chapter has described how integrating services among and across health care organizations and community-based organizations can improve health and address complex care needs. Further, partnerships between health care organizations and public health systems can advance community health goals. Recommendation 5 describes the broad actions that different stakeholders need to take to improve coordination and partnerships between and among the health care system, community resources, and public health bodies. Further, the recommendation introduces two specific actions that can be taken to produce change immediately by rewarding care that improves population health and by increasing the accuracy of metrics that measure population health.

Recommendation 5: Community Links

Promote community-clinical partnerships and services aimed at managing and improving health at the community level. Care delivery and community-based organizations and agencies should partner with each other to develop cooperative strategies for the design, implementation, and accountability of services aimed at improving individual and population health.
Strategies for progress toward this goal:

Health care delivery organizations and clinicians should partner with community-based organizations and public health agencies to leverage and coordinate prevention, health promotion, and community-based interventions to improve health outcomes, including strategies related to the assessment and use of web-based tools.

Public and private payers should incorporate population health improvement into their health care payment and contracting policies and accountability measures.

Health economists, health service researchers, professional specialty societies, and measure development organizations should continue to improve measures that can readily be applied to assess performance on both individual and population health.

For many patients, care can be fragmented and uncoordinated, whether they are transitioning from the hospital to a community setting or between two different clinicians. As patient needs have grown more complex, focusing on coordination and communication across all of a patient's health care providers has become increasingly crucial. These coordination and communication needs may be more acute when patients require services beyond the traditional health care system, such as social and community services, for managing their condition. Recommendation 6 outlines actions that need to be taken to improve care transitions and coordination to provide seamless care for patients.

Recommendation 6: Care Continuity

Improve coordination and communication within and across organizations. Payers should structure payment and contracting to reward effective communication and coordination between and among members of a patient's care team.
Strategies for progress toward this goal:

Health care delivery organizations and clinicians, partnering with patients, families, and community organizations, should develop coordination and transition processes, data sharing capabilities, and communication tools to ensure safe, seamless patient care.

Health economists, health service researchers, professional specialty societies, and measure development organizations should develop and test metrics with which to monitor and evaluate the effectiveness of care transitions in improving patient health outcomes.

Public and private payers should promote effective care transitions that improve patient health through their payment and contracting policies.

Given the advantages that accrue from involving patients and communities in health care, their inclusion is a goal for a learning health care system. Challenges are entailed in promoting this involvement, from changing the existing culture of medicine to creating metrics that accurately measure involvement. As noted in this chapter, there are differences between patient involvement in care and measures such as patient satisfaction. However, these challenges do not prevent a focus on patients in care, and each can be overcome to allow for a health care system that continually improves patient care.

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1

Patient Protection and Affordable Care Act, Public Law 111-148, 111th Congress (March 23, 2010).

2

Patient Protection and Affordable Care Act, Public Law 111-148, 111th Congress (March 23, 2010).

3

The term food desert refers to neighborhoods and communities where access to affordable and nutritious foods is limited ( IOM, 2009).

4

Note that in Chapters 6- 9, the committee's recommendations are numbered according to their sequence in the taxonomy in Chapter 10.

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Engaging Patients, Families, and Communities

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Clinicians and health care staff work tirelessly to care for their patients in an increasingly complex, inefficient, and stressful environment. However, the structure, incentives, and culture of the system in which they work are often-perhaps usually-poorly aligned to support their efforts to respond to patients' needs as their core priority.

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Technology only one piece of implementing patient engagement

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“Connected health encompasses terms such as wireless, digital, electronic, mobile, and telehealth and refers to a conceptual model for health management where devices, services or interventions are designed around the patient’s needs, and health related data is shared, in such a way that the patient can receive care in the most proactive and efficient manner possible” (Heath, 2018). 

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“Connected health encompasses terms such as wireless, digital, electronic, mobile, and telehealth and refers to a conceptual model for health management where devices, services or interventions are designed around the patient’s needs, and health related data is shared, in such a way that the patient can receive care in the most proactive and efficient manner possible” (Heath, 2018). 

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Enabling Patients to be Proactive With Their Health

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Enabling Patients to be Proactive With Their Health

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Each of the following sources of evidence and information has been used to inform the recommendations on education programmes of care and a discussion of this is presented in section 10.5.2.

10.5.1.3. Literature review: generic components of education programmes

Recent NICE guidelines have made a number of recommendations about education programmes for specific conditions. However, outcomes are likely to vary by specific intervention and specific condition (for example, people with more severe conditions may be more willing to make behavioural changes) and so consideration of whether or not to implement specific education programmes is best retained within condition-specific guidelines.

In this review we therefore aimed to undertake a focused search to explore whether there was evidence about generic components of patient education programmes that improve patient-related outcomes and are transferable across disease populations. An economic search was not be undertaken for this review question as useful cost effectiveness analysis would not be able to be performed for generic components and disease specific analyses would not be generalisable.
Review question: What generic components of patient education programmes improve patient experience?
There was no date limit placed on the literature search for systematic reviews investigating the efficacy of different education programme components. Systematic reviews that included RCT and cohort design studies of adults over the age of 16 years were considered for inclusion.

Systematic reviews were excluded if their included studies were predominantly focusing on people using the health services for the treatment of mental health problems.

One systematic review was identified that addressed the question. The systematic review considered interventions to improve knowledge, adherence, and clinical outcomes in patients with chronic conditions. 70 studies conducted between 1961 and 1984 were included. 20 addressed hypertension, 13 diabetes, 9 mental problems, 6 asthma, 4 hormone therapy, 4 congestive heart failure and other cardiac conditions, 3 rehabilitation therapy, 2 anticoagulant therapy, and 1 each tuberculosis, epilepsy, renal transplants, chronic obstructive pulmonary disease, hyperlipoproteinemic conditions, chronic renal failure, hemophilia, glaucoma, and mixed chronic illnesses.

See Appendix F for details of studies that were included in the Mullens systematic review. The overall group of 27 studies that measured knowledge were not homogeneous (H=81.68, p<0.05). See Table 35 for a summary of results.

A weighted least squares analysis was performed to test the impact of various strategy groups on effect size values in conjunction with other study variables that might have exerted an influence (study design, measurement quality, type of comparison group used, difference in educational rating score for the experimental and control groups, length of time the results were observed, strategy group, education rating score, type of ES calculation formula used). The residual sum of squares = 25.77, 24df, P<0.05, adjusted R ² = 0.82.

See Table 36 for results of the analysis.

Adherence was defined as probability or percentage of drug errors. For results of the analysis see Table 37 and Table 38.

Evidence statements

# data[].attributes.attachment_link.title
Enabling patients to actively participate in their care

# data[].attributes.attachment_link.description
The importance of enabling patients to be active participants in their care has received extensive policy attention in the last few years10,116. Patients have the primary responsibility for managing their health in the context of their wider lives and this needs to be recognised within the provision of services and in the ways health care professionals interact with patients.

# data[].attributes.body
PATIENT STRATEGIES

Write down a list of questions before you go to each appointment so that nothing is forgotten

Ask for clarification if something doesn’t make sense

Patients learn in different ways – is there a different way the information can be explained? (i.e. drawings, pictures, etc.)

Have a caregiver with you – two sets of eyes and ears are better than one

If the doctor doesn’t speak your native language, bring a trusted friend or family member that can help interpret. Alternatively, ask the front desk staff if an interpreter can be provided (interpreter services are more available than ever)

Ask how to interpret your lab results – what do they mean, what is considered the normal range, what should you be concerned about, etc.

Ask if there are different treatment options that fall in line with what you value as a patient

Ask if these treatments are covered by your insurance

Ask if coupons are available to help offset costs for medications that are more expensive

Flumer, C., (2020). Breaking down barriers, talking to your doctor. Patients Rising.

# data[].attributes.headline
Facilitating Engagement via Patient Portals

# data[].attributes.subject
Facilitating Engagement via Patient Portals

# data[].attributes.attachment_link.readable_text
Review

¹ Centre for Health Services Research, Faculty of Medicine, The University of Queensland, Woolloongabba, Australia

² Institute for Teaching and Learning Innovation, The University of Queensland, Brisbane, Australia

³ School of Business, Faculty of Business, Economics and Law, The University of Queensland, Brisbane, Australia

⁴ Metro North Hospital and Health Service, Department of Health, Queensland Government, Brisbane, Australia

⁵ Metro South Hospital and Health Service, Department of Health, Queensland Government, Brisbane, Australia

⁶ University of Queensland School of Medicine, Brisbane, Australia

*all authors contributed equally

Corresponding Author:

Monika Janda, PhD

Centre for Health Services Research

Faculty of Medicine

The University of Queensland

Level 2, Building 33, Princess Alexandra Hospital

Woolloongabba,

Australia

Phone: 61 7 3176 4569

Fax:61 7 3365 1488

Email: m.janda@uq.edu.au

Background: Engaging patients in the delivery of health care has the potential to improve health outcomes and patient satisfaction. Patient portals may enhance patient engagement by enabling patients to access their electronic medical records (EMRs) and facilitating secure patient-provider communication.

Objective: The aim of this study was to review literature describing patient portals tethered to an EMR in inpatient settings, their role in patient engagement, and their impact on health care delivery in order to identify factors and best practices for successful implementation of this technology and areas that require further research.

Methods: A systematic search for articles in the PubMed, CINAHL, and Embase databases was conducted using keywords associated with patient engagement, electronic health records, and patient portals and their respective subject headings in each database. Articles for inclusion were evaluated for quality using A Measurement Tool to Assess Systematic Reviews (AMSTAR) for systematic review articles and the Quality Assessment Tool for Studies with Diverse Designs for empirical studies. Included studies were categorized by their focus on input factors (eg, portal design), process factors (eg, portal use), and output factors (eg, benefits) and by the valence of their findings regarding patient portals (ie, positive, negative, or mixed).

Results: The systematic search identified 58 articles for inclusion. The inputs category was addressed by 40 articles, while the processes and outputs categories were addressed by 36 and 46 articles, respectively: 47 articles addressed multiple themes across the three categories, and 11 addressed only a single theme. Nineteen articles had high- to very high-quality, 21 had medium quality, and 18 had low- to very low-quality. Findings in the inputs category showed wide-ranging portal designs; patients' privacy concerns and lack of encouragement from providers were among portal adoption barriers while information access and patient-provider communication were among facilitators. Several methods were used to train portal users with varying success. In the processes category, sociodemographic characteristics and medical conditions of patients were predictors of portal use; some patients wanted unlimited access to their EMRs, personalized health education, and nonclinical information; and patients were keen to use portals for communicating with their health care teams. In the outputs category, some but not all studies found patient portals improved patient engagement; patients perceived some portal functions as inadequate but others as useful; patients and staff thought portals may improve patient care but could cause anxiety in some patients; and portals improved patient safety, adherence to medications, and patient-provider communication but had no impact on objective health outcomes.

Conclusions: While the evidence is currently immature, patient portals have demonstrated benefit by enabling the discovery of medical errors, improving adherence to medications, and providing patient-provider communication, etc. High-quality studies are needed to fully understand, improve, and evaluate their impact.

J Med Internet Res 2019;21(4):e12779

doi:10.2196/12779

Keywords

The increase in patient portal implementation is, in part, due to some preliminary evidence that they may improve patient engagement [] and health outcomes such as medication adherence [-]. Government incentive programs and regulations also influenced some health care organizations to implement patient portals [,]. For example, in the United States, implementing patient portals was a way to meet the requirements for Meaningful Use, Stage 2, of the Healthcare Information Technology for Economic and Clinical Health Act [].

The aim of this study was to review literature describing patient portals tethered to an EMR in inpatient settings, their role in patient engagement, and their impact on health care delivery in order to identify factors and best practices for successful implementation of this technology and areas that require further research. Our review aims to inform researchers, health care organizations, and policymakers.

Search Strategy

The PubMed, CINAHL, and Embase databases were searched for articles published between 2005 and 2017 using keywords related to patient engagement, electronic health records, patient portals, and their associated subject headings in each database: the full search terms for each database are provided in .

Study Selection and Quality Assessment

shows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram for the systematic search and selection process. Inclusion criteria for articles were (1) written in English, (2) hospital inpatient setting, and (3) patient portals tethered to a hospital EMR. The initial combined database search produced 703 articles, and an additional 16 were identified by scanning their reference lists. After eliminating duplicates, the article abstracts were independently reviewed by three authors to identify articles that did not meet the inclusion criteria. This led to 617 articles being excluded. Full-text screening was conducted for the remaining 102 articles, leading to the identification of 62 articles that did not meet the inclusion criteria. At each stage, the authors met to reconcile, by consensus, any disagreements about article inclusion. An independent coder also coded the 102 articles for inclusion/exclusion using our criteria, and interrater agreement was high (Cohen kappa=.75). In cases of disagreement, we opted to include the article if it addressed a potentially important policy issue (eg, privacy issues, rural/urban divide). To ensure we included as many up-to-date papers as possible, we periodically conducted database searches for new articles after the initial search. This step was performed by just one author because by this stage, the authors had established a well-developed understanding of the inclusion/exclusion criteria. This periodic update, up to August 2018, identified another 18 articles for inclusion.

The included articles were assessed for quality. Two authors independently scored each article's quality using the most recent version of A Measurement Tool to Assess Systematic Reviews (AMSTAR 2) [] for review articles and the Quality Assessment Tool for Studies with Diverse Designs (QATSDD) [] for qualitative, quantitative, and mixed empirical studies. We classified the overall AMSTAR 2- or QATSDD-derived score for each paper on a 5-point scale (very low, low, medium, high, very high), thus establishing the qualities of all articles on one scale. The ratings by the authors and the independent coder were highly correlated ( r=.81). A third coauthor then independently reviewed and reconciled the scores. We assigned valence ratings to each article to characterize the overall findings in each article regarding patient portals as positive, negative, or mixed [].

Data Analysis

We analyzed the information extracted from the included articles by categorizing the themes related to the implementation of patient portals into inputs, processes, and outputs. The inputs are the material (eg, hardware and software) and nonmaterial (eg, leadership) components that facilitate or impair the establishment or use of the portal. Processes include the interactions of the users with the portal. Outputs comprise the results of the implementation or the use of the portal. Through the analysis, we identified 14 themes within these three categories, shown in .

‎
Figure 1. Preferred Reporting Items for Systematic Reviews and Meta-Analyses flowchart of the search and selection process.
View this figure

Description of the themes identified in the implementation of inpatient portals.

Input themes

Portal design: umbrella term for all design-related aspects of the portal including portal interface, content, features, and functions

Usability: extent to which a patient portal has the property of being able to be used by patients, caregivers, and health care teams to enhance patient engagement with effectiveness, efficiency, and satisfaction

Barriers: factors that hinder widespread adoption or portal use

Facilitators: factors that motivate or enable users to sign up for or actively use a portal

User training: equipping patients and health care team members with the necessary skills and knowledge to effectively use a portal

Organizational factors: culture of a health care organization; decisions and actions it takes when an initial consideration is made to implement a patient portal

Process themes

Adoption: from a patient perspective, adoption is the registration for a portal account; from a health care provider perspective, portal adoption refers to acceptance and promotion of the portal []

Use: active engagement and continued use after signing up for a portal []

Information: all aspects associated with providing patients with clinical and nonclinical information via a portal

Communication: all aspects associated with portal-based patient-provider communication

Output themes

Patient engagement: active involvement of patients in their own health care

User perceptions: thoughts, feelings, and opinions of patients, caregivers, and health care team members about their experiences with a patient portal

Health outcomes: impact of patient portals on clinical indicators

Benefits: value provided by patient portals to the health care delivery process

Textbox 1. Description of the themes identified in the implementation of inpatient portals.

Overview: Search Strategy, Study Selection, and Quality Assessment

Details of the 58 articles included in this review are given in and . The majority of the articles (41) are indexed in all three databases; 13 articles are indexed in two databases, and only 4 are in indexed in a single database. The PubMed and Embase databases each index 56 articles while CINAHL indexes 41 articles. Nineteen articles described qualitative studies, 18 quantitative studies, and 9 mixed method studies, while 12 were reviews. Our quality assessment placed 19 articles in the high- or very high-quality categories, 21 in the medium category, and 18 in the low- or very low-quality categories. Twenty-nine articles were assigned mixed valence, 16 articles were assigned positive valence, and 2 were assigned negative valence. Valence was not applicable or could not be drawn in 11 articles (ie, those that examined portals but that were not focused on evaluating them in any way).

There was a spread of articles addressing themes over the inputs, processes and outputs categories (see ). However, only one-third of the articles (19/58) addressed the full spectrum of categories.

shows that there was corroboration among studies for some findings (eg, information) but contradicting findings in some themes (eg, health outcomes). We did not observe trends in the findings that were related to study quality or design (ie, there was no association between study quality or study design and reported findings).

Summary of findings in the reviewed literature.

Inputs

Portal design

Artificial intelligence was used to enhance portal designs []

Portals can be designed for specific diseases or medical conditions []

Usability

Barriers

Lack of appropriate training []

Doubt of the portal's usefulness []

Lost passwords [,]

Anxiety associated with viewing personal medical information []

Data security and privacy concerns [,]

Lack of encouragement from providers [,]

Facilitators

Access to information [,,,,,-]

Provider encouragement []

User training
Patients were trained using videos and reading material [,]

Organizational factors

Rural hospitals were more likely to report costs and obtaining staff cooperation as barriers to health information technology (HIT; including patient portals) adoption than urban hospitals []

Small hospitals were more likely to report cost-related barriers than large hospitals []

Leaderships had crucial roles in the implementation of patient portals, working closely with developers in system design, developing policies to guide user training, and integrating portals into clinical workflows []

Implementation of patient portals varied across organizations due to different interpretations of government legislations by the health care organizations []

Processes

Adoption

Use

Portal use was higher among patients with greater disease severity []

Patients were less inclined to use a portal when they were seriously ill, in intense pain,or soon after undergoing multiple tests or procedures []

Information
Some patients preferred to have access to their entire EMR, including doctors' notes [,]

Communication

Patients and caregivers expressed interest in using portals to communicate with health care staff [,,,] but not many actually used this feature [,]

Some patients wanted an option to send messages to specific staff members and an indication of whether a message had been read and when to expect a response []

Outputs

Patient engagement
Some portals did not significantly improve patient engagement [,] but others did [,,,,]

User perceptions

Health care teams had preimplementation concerns about disruptions to workflows and potential for large volumes of patient messages, but such concerns did not materialize []

Patients who used a disease-specific portal were more satisfied than those who used a generic portal []

Health outcomes

Benefits

Improved adherence to medication [,,,,,]

Increased patient engagement [,,,,,,,,]

Textbox 2. Summary of findings in the reviewed literature.

Patient Portal Inputs

Forty articles addressed themes in the inputs category. We identified 22 articles that addressed portal design. In an iterative design approach, feedback from patients, including requests for electronic games and other functions, was used to refine designs. Enhancements included links to medical education, artificial intelligence techniques, and disease-specific design.

Organizational factors (leadership, staff support, and key decisions, etc) was the least addressed theme. However, the findings summarized in indicate that organizational factors are likely the most crucial in determining whether or how patient portals are implemented.

Patient Portal Processes

Patient-provider communication, usually in the form of secure messages, is a key feature of inpatient portals []. Despite expressions of interest in this feature, actual use was low [,]; in a pediatric study with 296 parents participating, only about 6% sent messages to health care teams via the inpatient portal []. Most portals enabled patients to send messages to a single mailbox that was accessed by staff members on duty, but some patients wanted to communicate with specific staff members []. Similar to adoption and use, sociodemographic factors were predictors of which patients used the messaging feature (see ).

Patient Portal Outputs

The outputs category was addressed by 46 articles, and 24 articles addressed patient engagement. Results of patient engagement were mixed: portals in some studies did not cause statistically significant improvement, but patients in other studies reported that portals enabled better engagement in their care.

Finally, 7 articles addressed the benefits of patient portals, and shows that portals offers a wide range of benefits for patient care.

Principal Findings

This systematic review examined 58 articles studying inpatient portals. Although there was overlap in the themes reflected in these studies, there was also significant variation in the setting, patient population, software, outcomes assessed, and study methodology, making it hard to come to a definitive conclusion on whether inpatient portals are beneficial. This is further shown by the higher number of included studies that were judged to relay mixed valence than those with positive valence. However, more studies relayed positive than negative valence, showing that patient portals may be beneficial for health care. We discuss below the patient portal input, process and output factors that contribute to this assessment, and the areas of research that need focus in order to improve patient care. provides a visual summary.

‎
Figure 2. Conceptual framework summarizing the findings and key areas for future research.
View this figure

Patient Portal Inputs

When assessing common themes within the inputs category, portal design, usability, and barriers were more widely covered than user training and organizational factors. Many articles showed that good portal design is crucial for usability and adoption by patients. While most studies involved users in the design process, more needs to be done to overcome design-related barriers, particularly for people with low health literacy [,,]. Increasing the use of enabling technology such as voice-commanded digital assistants, artificial intelligence, and natural language processing could make the systems cater to a wider range of audiences. Designing platforms so that they can be displayed on users' personal mobile devices could be another enabler of portal adoption.

Patients' concerns regarding privacy and security of their medical information [,] are particularly relevant in cases where caregivers need access to patients' EMRs. Discussion of privacy issues in cases of caregiver access to patient medical information in the literature is limited. In the absence of formal policy for caregiver access, patients may opt to disclose personal log-in details to their caregivers, which is not recommended [].

The results of user training showed that reliance on a one-size-fits-all approach may not be effective for educating users because of varying preferences. Training could be enhanced by providing information that directly addresses common patient concerns (eg, information security) and health care staff concerns (eg, workflow changes).

Information on the best timing to deliver training material to patients is lacking in the literature. While staff training can be scheduled ahead of deploying a patient portal, patients may only encounter a portal upon hospitalization. Furthermore, the severity of their condition may limit their ability to focus on or understand the training material. Innovation may be needed to inform patients about portal services prior to hospitalization. For example, patients could sign up for outpatient portals which would be similar in design to the inpatient portals to ensure seamless transition between the two portals. Hospitals could also collaborate with medical insurance providers to make training material available to potential patients already signing up for hospital insurance.

Patient Portal Processes

Health care organizations may view patient requests of nonclinical information and functions such as electronic games [,,,] as fringe requests that could raise developmental costs. However, granting these requests may improve portal adoption and use and overall patient satisfaction. Also, patients have requested background information on their health care staff, but staff perceptions about the disclosure of such information to their patients is not known [,]. Further research is needed to uncover staff perceptions in this regard and explore ways of implementing this service.

Portal-based patient-provider communication is potentially beneficial but may also be disruptive []. Although staff concerns about potential interruptions caused by constant patient messaging did not materialize [], in practice, staff members may be overwhelmed by messages at any time. Structured messaging may be a solution that ensures patients communicate only important and relevant information []. If health care organizations decide to enforce structured messaging, they should prioritize patient safety and therefore avoid restrictions that could prevent patients reporting genuine concerns.

Patient Portal Outputs

Research in the evaluation of patient portals is also currently limited. Standardized evaluation frameworks and measures are needed to enable better comparisons of patient portal implementation and outcomes in the future.

Limitations

While an extensive search was undertaken, the majority of the included studies were conducted at single locations, used outcome measures that were not comparable to those used in other studies, and had small sample sizes. That means results of those studies may not be generalizable to other population groups. Also, a number of the studies were conducted in controlled settings, such as closed-door observations and interviews, which would not be representative of hospital settings. The absence of standardized evaluation tools means the results could not be compared or synthesized, and we were thus limited to providing a descriptive summary of findings only. Most studies that addressed user perceptions or patient-reported results depended on the opinions of those who completed end-of-study questionnaires or interviews; such results could be biased as they may lack feedback from participants who felt uneasy about giving negative feedback. Finally, our conceptual framework enabled us to group the findings gleaned from the included articles, although there was some overlap in the categories caused by interdependence in some of the themes.

Conclusion

The review results suggest that the available evidence for inpatient portals is currently immature. Standardized outcomes assessment and more high-quality studies with objective outcomes (length of stay, mortality, and morbidity) are required to fully understand the impact of such portals.

Acknowledgments

This study benefited from the support of the Australian Research Council (ARC FT130100942), the National Health and Medical Research Council Translating Research into Practice Fellowship (APP 1151021), and the University of Queensland.

Conflicts of Interest

None declared.
‎ ‎ ‎
‎

AMSTAR: A Measurement Tool to Assess Systematic Reviews

EMR: electronic medical record

HIT: health information technology

QATSDD: Quality Assessment Tool for Studies With Diverse Designs

Edited by G Eysenbach; submitted 18.11.18; peer-reviewed by B Xie, A McAlearney, G Strudwick, T Irizarry; comments to author 27.12.18; revised version received 30.01.19; accepted 17.02.19; published 11.04.19

©Ronald Dendere, Christine Slade, Andrew Burton-Jones, Clair Sullivan, Andrew Staib, Monika Janda. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 11.04.2019.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

Background: Engaging patients in the delivery of health care has the potential to improve health outcomes and patient satisfaction. Patient portals may enhance patient engagement by enabling patients to access their electronic medical records (EMRs) and facilitating secure patient-provider communication.

Objective: The aim of this study was to review literature describing patient portals tethered to an EMR in inpatient settings, their role in patient engagement, and their impact on health care delivery in order to identify factors and best practices for successful implementation of this technology and areas that require further research.

Methods: A systematic search for articles in the PubMed, CINAHL, and Embase databases was conducted using keywords associated with patient engagement, electronic health records, and patient portals and their respective subject headings in each database. Articles for inclusion were evaluated for quality using A Measurement Tool to Assess Systematic Reviews (AMSTAR) for systematic review articles and the Quality Assessment Tool for Studies with Diverse Designs for empirical studies. Included studies were categorized by their focus on input factors (eg, portal design), process factors (eg, portal use), and output factors (eg, benefits) and by the valence of their findings regarding patient portals (ie, positive, negative, or mixed).

Results: The systematic search identified 58 articles for inclusion. The inputs category was addressed by 40 articles, while the processes and outputs categories were addressed by 36 and 46 articles, respectively: 47 articles addressed multiple themes across the three categories, and 11 addressed only a single theme. Nineteen articles had high- to very high-quality, 21 had medium quality, and 18 had low- to very low-quality. Findings in the inputs category showed wide-ranging portal designs; patients' privacy concerns and lack of encouragement from providers were among portal adoption barriers while information access and patient-provider communication were among facilitators. Several methods were used to train portal users with varying success. In the processes category, sociodemographic characteristics and medical conditions of patients were predictors of portal use; some patients wanted unlimited access to their EMRs, personalized health education, and nonclinical information; and patients were keen to use portals for communicating with their health care teams. In the outputs category, some but not all studies found patient portals improved patient engagement; patients perceived some portal functions as inadequate but others as useful; patients and staff thought portals may improve patient care but could cause anxiety in some patients; and portals improved patient safety, adherence to medications, and patient-provider communication but had no impact on objective health outcomes.

Conclusions: While the evidence is currently immature, patient portals have demonstrated benefit by enabling the discovery of medical errors, improving adherence to medications, and providing patient-provider communication, etc. High-quality studies are needed to fully understand, improve, and evaluate their impact.

J Med Internet Res 2019;21(4):e12779

doi:10.2196/12779

Keywords

The increase in patient portal implementation is, in part, due to some preliminary evidence that they may improve patient engagement [] and health outcomes such as medication adherence [-]. Government incentive programs and regulations also influenced some health care organizations to implement patient portals [,]. For example, in the United States, implementing patient portals was a way to meet the requirements for Meaningful Use, Stage 2, of the Healthcare Information Technology for Economic and Clinical Health Act [].

The aim of this study was to review literature describing patient portals tethered to an EMR in inpatient settings, their role in patient engagement, and their impact on health care delivery in order to identify factors and best practices for successful implementation of this technology and areas that require further research. Our review aims to inform researchers, health care organizations, and policymakers.

Search Strategy

The PubMed, CINAHL, and Embase databases were searched for articles published between 2005 and 2017 using keywords related to patient engagement, electronic health records, patient portals, and their associated subject headings in each database: the full search terms for each database are provided in .

Study Selection and Quality Assessment

shows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram for the systematic search and selection process. Inclusion criteria for articles were (1) written in English, (2) hospital inpatient setting, and (3) patient portals tethered to a hospital EMR. The initial combined database search produced 703 articles, and an additional 16 were identified by scanning their reference lists. After eliminating duplicates, the article abstracts were independently reviewed by three authors to identify articles that did not meet the inclusion criteria. This led to 617 articles being excluded. Full-text screening was conducted for the remaining 102 articles, leading to the identification of 62 articles that did not meet the inclusion criteria. At each stage, the authors met to reconcile, by consensus, any disagreements about article inclusion. An independent coder also coded the 102 articles for inclusion/exclusion using our criteria, and interrater agreement was high (Cohen kappa=.75). In cases of disagreement, we opted to include the article if it addressed a potentially important policy issue (eg, privacy issues, rural/urban divide). To ensure we included as many up-to-date papers as possible, we periodically conducted database searches for new articles after the initial search. This step was performed by just one author because by this stage, the authors had established a well-developed understanding of the inclusion/exclusion criteria. This periodic update, up to August 2018, identified another 18 articles for inclusion.

The included articles were assessed for quality. Two authors independently scored each article's quality using the most recent version of A Measurement Tool to Assess Systematic Reviews (AMSTAR 2) [] for review articles and the Quality Assessment Tool for Studies with Diverse Designs (QATSDD) [] for qualitative, quantitative, and mixed empirical studies. We classified the overall AMSTAR 2- or QATSDD-derived score for each paper on a 5-point scale (very low, low, medium, high, very high), thus establishing the qualities of all articles on one scale. The ratings by the authors and the independent coder were highly correlated ( r=.81). A third coauthor then independently reviewed and reconciled the scores. We assigned valence ratings to each article to characterize the overall findings in each article regarding patient portals as positive, negative, or mixed [].

Data Analysis

We analyzed the information extracted from the included articles by categorizing the themes related to the implementation of patient portals into inputs, processes, and outputs. The inputs are the material (eg, hardware and software) and nonmaterial (eg, leadership) components that facilitate or impair the establishment or use of the portal. Processes include the interactions of the users with the portal. Outputs comprise the results of the implementation or the use of the portal. Through the analysis, we identified 14 themes within these three categories, shown in .

‎
Figure 1. Preferred Reporting Items for Systematic Reviews and Meta-Analyses flowchart of the search and selection process.
View this figure

Description of the themes identified in the implementation of inpatient portals.

Input themes

Portal design: umbrella term for all design-related aspects of the portal including portal interface, content, features, and functions

Usability: extent to which a patient portal has the property of being able to be used by patients, caregivers, and health care teams to enhance patient engagement with effectiveness, efficiency, and satisfaction

Barriers: factors that hinder widespread adoption or portal use

Facilitators: factors that motivate or enable users to sign up for or actively use a portal

User training: equipping patients and health care team members with the necessary skills and knowledge to effectively use a portal

Organizational factors: culture of a health care organization; decisions and actions it takes when an initial consideration is made to implement a patient portal

Process themes

Adoption: from a patient perspective, adoption is the registration for a portal account; from a health care provider perspective, portal adoption refers to acceptance and promotion of the portal []

Use: active engagement and continued use after signing up for a portal []

Information: all aspects associated with providing patients with clinical and nonclinical information via a portal

Communication: all aspects associated with portal-based patient-provider communication

Output themes

Patient engagement: active involvement of patients in their own health care

User perceptions: thoughts, feelings, and opinions of patients, caregivers, and health care team members about their experiences with a patient portal

Health outcomes: impact of patient portals on clinical indicators

Benefits: value provided by patient portals to the health care delivery process

Textbox 1. Description of the themes identified in the implementation of inpatient portals.

Overview: Search Strategy, Study Selection, and Quality Assessment

Details of the 58 articles included in this review are given in and . The majority of the articles (41) are indexed in all three databases; 13 articles are indexed in two databases, and only 4 are in indexed in a single database. The PubMed and Embase databases each index 56 articles while CINAHL indexes 41 articles. Nineteen articles described qualitative studies, 18 quantitative studies, and 9 mixed method studies, while 12 were reviews. Our quality assessment placed 19 articles in the high- or very high-quality categories, 21 in the medium category, and 18 in the low- or very low-quality categories. Twenty-nine articles were assigned mixed valence, 16 articles were assigned positive valence, and 2 were assigned negative valence. Valence was not applicable or could not be drawn in 11 articles (ie, those that examined portals but that were not focused on evaluating them in any way).

There was a spread of articles addressing themes over the inputs, processes and outputs categories (see ). However, only one-third of the articles (19/58) addressed the full spectrum of categories.

shows that there was corroboration among studies for some findings (eg, information) but contradicting findings in some themes (eg, health outcomes). We did not observe trends in the findings that were related to study quality or design (ie, there was no association between study quality or study design and reported findings).

Summary of findings in the reviewed literature.

Inputs

Portal design

Artificial intelligence was used to enhance portal designs []

Portals can be designed for specific diseases or medical conditions []

Usability

Barriers

Lack of appropriate training []

Doubt of the portal's usefulness []

Lost passwords [,]

Anxiety associated with viewing personal medical information []

Data security and privacy concerns [,]

Lack of encouragement from providers [,]

Facilitators

Access to information [,,,,,-]

Provider encouragement []

User training
Patients were trained using videos and reading material [,]

Organizational factors

Rural hospitals were more likely to report costs and obtaining staff cooperation as barriers to health information technology (HIT; including patient portals) adoption than urban hospitals []

Small hospitals were more likely to report cost-related barriers than large hospitals []

Leaderships had crucial roles in the implementation of patient portals, working closely with developers in system design, developing policies to guide user training, and integrating portals into clinical workflows []

Implementation of patient portals varied across organizations due to different interpretations of government legislations by the health care organizations []

Processes

Adoption

Use

Portal use was higher among patients with greater disease severity []

Patients were less inclined to use a portal when they were seriously ill, in intense pain,or soon after undergoing multiple tests or procedures []

Information
Some patients preferred to have access to their entire EMR, including doctors' notes [,]

Communication

Patients and caregivers expressed interest in using portals to communicate with health care staff [,,,] but not many actually used this feature [,]

Some patients wanted an option to send messages to specific staff members and an indication of whether a message had been read and when to expect a response []

Outputs

Patient engagement
Some portals did not significantly improve patient engagement [,] but others did [,,,,]

User perceptions

Health care teams had preimplementation concerns about disruptions to workflows and potential for large volumes of patient messages, but such concerns did not materialize []

Patients who used a disease-specific portal were more satisfied than those who used a generic portal []

Health outcomes

Benefits

Improved adherence to medication [,,,,,]

Increased patient engagement [,,,,,,,,]

Textbox 2. Summary of findings in the reviewed literature.

Patient Portal Inputs

Forty articles addressed themes in the inputs category. We identified 22 articles that addressed portal design. In an iterative design approach, feedback from patients, including requests for electronic games and other functions, was used to refine designs. Enhancements included links to medical education, artificial intelligence techniques, and disease-specific design.

Organizational factors (leadership, staff support, and key decisions, etc) was the least addressed theme. However, the findings summarized in indicate that organizational factors are likely the most crucial in determining whether or how patient portals are implemented.

Patient Portal Processes

Patient-provider communication, usually in the form of secure messages, is a key feature of inpatient portals []. Despite expressions of interest in this feature, actual use was low [,]; in a pediatric study with 296 parents participating, only about 6% sent messages to health care teams via the inpatient portal []. Most portals enabled patients to send messages to a single mailbox that was accessed by staff members on duty, but some patients wanted to communicate with specific staff members []. Similar to adoption and use, sociodemographic factors were predictors of which patients used the messaging feature (see ).

Patient Portal Outputs

The outputs category was addressed by 46 articles, and 24 articles addressed patient engagement. Results of patient engagement were mixed: portals in some studies did not cause statistically significant improvement, but patients in other studies reported that portals enabled better engagement in their care.

Finally, 7 articles addressed the benefits of patient portals, and shows that portals offers a wide range of benefits for patient care.

Principal Findings

This systematic review examined 58 articles studying inpatient portals. Although there was overlap in the themes reflected in these studies, there was also significant variation in the setting, patient population, software, outcomes assessed, and study methodology, making it hard to come to a definitive conclusion on whether inpatient portals are beneficial. This is further shown by the higher number of included studies that were judged to relay mixed valence than those with positive valence. However, more studies relayed positive than negative valence, showing that patient portals may be beneficial for health care. We discuss below the patient portal input, process and output factors that contribute to this assessment, and the areas of research that need focus in order to improve patient care. provides a visual summary.

‎
Figure 2. Conceptual framework summarizing the findings and key areas for future research.
View this figure

Patient Portal Inputs

When assessing common themes within the inputs category, portal design, usability, and barriers were more widely covered than user training and organizational factors. Many articles showed that good portal design is crucial for usability and adoption by patients. While most studies involved users in the design process, more needs to be done to overcome design-related barriers, particularly for people with low health literacy [,,]. Increasing the use of enabling technology such as voice-commanded digital assistants, artificial intelligence, and natural language processing could make the systems cater to a wider range of audiences. Designing platforms so that they can be displayed on users' personal mobile devices could be another enabler of portal adoption.

Patients' concerns regarding privacy and security of their medical information [,] are particularly relevant in cases where caregivers need access to patients' EMRs. Discussion of privacy issues in cases of caregiver access to patient medical information in the literature is limited. In the absence of formal policy for caregiver access, patients may opt to disclose personal log-in details to their caregivers, which is not recommended [].

The results of user training showed that reliance on a one-size-fits-all approach may not be effective for educating users because of varying preferences. Training could be enhanced by providing information that directly addresses common patient concerns (eg, information security) and health care staff concerns (eg, workflow changes).

Information on the best timing to deliver training material to patients is lacking in the literature. While staff training can be scheduled ahead of deploying a patient portal, patients may only encounter a portal upon hospitalization. Furthermore, the severity of their condition may limit their ability to focus on or understand the training material. Innovation may be needed to inform patients about portal services prior to hospitalization. For example, patients could sign up for outpatient portals which would be similar in design to the inpatient portals to ensure seamless transition between the two portals. Hospitals could also collaborate with medical insurance providers to make training material available to potential patients already signing up for hospital insurance.

Patient Portal Processes

Health care organizations may view patient requests of nonclinical information and functions such as electronic games [,,,] as fringe requests that could raise developmental costs. However, granting these requests may improve portal adoption and use and overall patient satisfaction. Also, patients have requested background information on their health care staff, but staff perceptions about the disclosure of such information to their patients is not known [,]. Further research is needed to uncover staff perceptions in this regard and explore ways of implementing this service.

Portal-based patient-provider communication is potentially beneficial but may also be disruptive []. Although staff concerns about potential interruptions caused by constant patient messaging did not materialize [], in practice, staff members may be overwhelmed by messages at any time. Structured messaging may be a solution that ensures patients communicate only important and relevant information []. If health care organizations decide to enforce structured messaging, they should prioritize patient safety and therefore avoid restrictions that could prevent patients reporting genuine concerns.

Patient Portal Outputs

Research in the evaluation of patient portals is also currently limited. Standardized evaluation frameworks and measures are needed to enable better comparisons of patient portal implementation and outcomes in the future.

Limitations

While an extensive search was undertaken, the majority of the included studies were conducted at single locations, used outcome measures that were not comparable to those used in other studies, and had small sample sizes. That means results of those studies may not be generalizable to other population groups. Also, a number of the studies were conducted in controlled settings, such as closed-door observations and interviews, which would not be representative of hospital settings. The absence of standardized evaluation tools means the results could not be compared or synthesized, and we were thus limited to providing a descriptive summary of findings only. Most studies that addressed user perceptions or patient-reported results depended on the opinions of those who completed end-of-study questionnaires or interviews; such results could be biased as they may lack feedback from participants who felt uneasy about giving negative feedback. Finally, our conceptual framework enabled us to group the findings gleaned from the included articles, although there was some overlap in the categories caused by interdependence in some of the themes.

Conclusion

The review results suggest that the available evidence for inpatient portals is currently immature. Standardized outcomes assessment and more high-quality studies with objective outcomes (length of stay, mortality, and morbidity) are required to fully understand the impact of such portals.

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patient portal; electronic medical record; electronic health record; patient engagement; digital hospital

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Patient Portals Facilitating Engagement With Inpatient Electronic Medical Records: A Systematic Review

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Background: Engaging patients in the delivery of health care has the potential to improve health outcomes and patient satisfaction. Patient portals may enhance patient engagement by enabling patients to access their electronic medical records (EMRs) and facilitating secure patient-provider communication.

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Health literacy is defined as "the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions."

Use plain language:
*Organize information ensuring important points are presented first.
*Use simple language or define medical terms.
*Use an active voice.
*Break down complex information into understandable parts.

Use visual aids:
*Simple illustrations, images,  informational graphics, and videos.

Recommend and use technology:
*Utilize patient portals to  give access to critical health information such as results, treatments, or appointments.
*Telemedicine to assess and treat underserved populations or those with limited mobility.
*Mobile applications for learning options.

Use effective teaching methods:
*Ask open-ended questions
*Use teach-back communication.
*Use show-back when educating use of device or task.
*Speak slowly when providing instructions.

Advance Care Planning (ACP) Decisions. (2019). Four Simple Strategies for Improving Patient Health Literacy. https://acpdecisions.org/four-simple-strategies-for-improving-your-patients-health-literacy/.

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National Action Plan to Improve Health Literacy

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The National Action Plan to Improve Health Literacy seeks to engage organizations, professionals, policymakers, communities, individuals, and families in a linked, multi-sector effort to improve health literacy. The Action Plan is based on 2 core principles:

All people have the right to health information that helps them make informed decisions

Health services should be delivered in ways that are easy to understand and that improve health, longevity, and quality of life

The Action Plan contains 7 goals that will improve health literacy and strategies for achieving them:

1. Develop and disseminate health and safety information that is accurate, accessible, and actionable

2. Promote changes in the health care system that improve health information, communication, informed decision-making, and access to health services

3. Incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula in child care and education through the university level

4. Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community

5. Build partnerships, develop guidance, and change policies

6. Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy

7. Increase the dissemination and use of evidence-based health literacy practices and interventions

Many of the strategies highlight actions that particular organizations or professions can take to further these goals. It will take everyone working together in a linked and coordinated manner to improve access to accurate and actionable health information and usable health services. By focusing on health literacy issues and working together, we can improve the accessibility, quality, and safety of health care; reduce costs; and improve the health and quality of life of millions of people in the United States.

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Footnotes

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National Action Plan to Improve Health Literacy

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The National Action Plan to Improve Health Literacy seeks to engage organizations, professionals, policymakers, communities, individuals, and families in a linked, multi-sector effort to improve health literacy.

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World Health Organization Community Engagement Module

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World Health Organization Community Engagement Module