Peer-Based Support as an Effective Paradigm of Care for Persons with Chronic Illness

Data from 2018 suggest most US physicians spend between 12 and 28 minutes with their patients, with 1 in 4 spending less than 12 minutes.¹ In many cases, these few minutes will be the only direct physician contact patients have for the year. Both patients and physicians agree that more time would be ideal; in fact, one survey noted that only 14% of physicians felt their visits with patients “offered all the time needed to provide the highest standards or care.”²

Peer support can help fill this gap, reinforcing physician recommendations while providing ongoing support around education, access to care, adherence, psychosocial challenges, and assistance with general daily maintenance. This type of support can be especially beneficial for patients with chronic illness.

An editorial in The Annals of Family Medicine in favor of provider-based peer support states, “Social support is a powerful force in human behavior and health,”² and indeed, substantial research documents the advantages of peer support in promoting positive patient outcomes.

Peer support programs leverage peers as resources to motivate constructive health behaviors and provide necessary patient education, a point pushed by field leaders Peers for Progress. This program began in 2007 and is supported by the American Academy of Family Physicians Foundation, who endlessly champion the advantages of peer support care models.

Peer support offered through centers of excellence for disease management, including specialty pharmacies, can offer meaningful contact and provide the needed lift to promote positive patient health outcomes.

What is Peer Support?

Through countless papers, review articles, economic analysis reports, and copious studies that implement peer support programs—each, in their own way, work toward a definition of “peer support,” a term that looks different within varying health care spaces. The simplest understanding of peer support in health care is when peers—"people sharing similar experiences or backgrounds”—become “great sources of support for one another” in navigating a chronic illness.³

For people living with a chronic illness, peer support links them with persons who have knowledge and experience that others, including many professionals, do not.

Four key features are considered synonymous with successful peer support programs:

• Assistance in daily management
• Social and emotional support
• Linkages to clinical care and community resources
• Ongoing support, extended over time

The idea of peer support is timeless, but its implementation in health care settings merits more critical consideration.

Goals of a peer support program

To put a fine point on it, the goal of a peer support program is to provide a more positive patient health outcome. These outcomes are gained by interventions that rely on community peers rather than trained professionals to address the daily challenges of a chronic illness.

Types of peer supporters

Peer supporters are typically 1 of 2 types: (1) a person who has knowledge of the condition from their own experiences, or (2) a person who is trained to be empathic and understanding of a particular condition. Their role is to extend the work of health care professionals by providing practical, educational, social, and emotional support.

They can help with many simple health care services (paperwork, medication ordering) and participate in community events as advocates for themselves (if applicable) and their patients.

Their role enhances other health care professionals’ jobs, but yet remains distinct from the health care provided by others within the field. Here are some types of peer support roles found within the health care community:

• Peer coaches—Patients with the disease are trained in one-on-one coaching sessions to help guide them through their illness.
• Promotores de Salud—Derived from a model within the Latino community, promotores de salud knit together family, community, and illness to promote strong support systems and healthy outcomes.
• Community health workers (CHW)—Individuals trained to understand the condition and who bridge the gap between professionals and patients.
• Peer support specialists (PSS)—Individuals with the condition who utilize their own recovery and coping strategies to support others struggling with the same condition.
• Patient navigators—Individuals who are trained to help other patients navigate the complex medical system to assure patients receive the access to care they need.

Within the specialty pharmacy space, examples of CHWs, PSSs, and patient navigators can be found.

Assisting in daily patient maintenance

Care for a chronic illness does not end with the physician; in fact, that is simply where it begins. Set upon the path of chronic illness and given diagnosis and treatment protocols, a patient must navigate the disruptions and adaptations now forced upon them. These are many and mirror diverging trails extending out from the crossroads of their illness.

Chief among these adaptations is perhaps medication adherence, the thing that, not solely, but may most promote disease management and a positive health outcome. One goal is to move the patient from compliance to adherence, a significant leap for many.

Compliant patients passively endure their medications, following the instructions given; as a child obeys the parent, the compliant patient relinquishes to the doctor. But the slip of time and distance between child/parent has a similar effect with patient/physician in that both child and patient often stray from the established rules of parent/physician.

Adherence promotes a more proactive behavior and indicates the patient buying into their care and disease maintenance. It is a lifestyle change that peer support can motivate. One study of patients with HIV found improvements in adherence to medication when peer supporters who were also HIV-positive and who had high levels of adherence were utilized.⁴

Another study which polled several peer supported antiretroviral therapy (ART) trials concluded, “Peer support plus telephone [intervention] was superior in improving adherence than standard of care.”⁵ Adherence to ART therapy is a lifelong commitment for persons with HIV.

Peer support from those taking ART therapy immediately evidences to new patients an ability to live with HIV and, furthermore, encourages an investment into the daily medication adherence necessary for survival.

Diet and exercise are other key components of using peer support for daily maintenance, and here, too, peer support shows a positive influence. These wraparound health initiatives also often fall outside the purview of a physician whose view may be necessarily restricted to disease and disease management only.

Peer support, however, has the flexibility to encourage healthy behaviors that ultimately nourish the patient of a chronic illness. For example, a key lifestyle change of type 2 diabetes is diet—a thing difficult for even the most dedicated persons to upend.

To help facilitate education and promote healthy eating and exercise habits, peer support offers a means for a more consistent intervention. In fact, the most statistically significant gains one study reported in using peer support for type 2 diabetes was in patients increasing their consumption of fruits and vegetables and engaging in exercise.⁶

A participant in one of these studies discussed his experience with peer support and sums it best:

“It is not the same conversation [as you have with] a professional. It is a pleasure to talk with someone about the difficulties surrounding diabetes in my life. Out of this type of conversation I got a lot of confidence and motivation and especially I got a chance to get control and management of my diabetes.”⁷

Medication adherence, diet, and exercise are each critical components in caring for patients with chronic illness, but each is difficult, if not impossible, to be managed by physicians alone. To achieve successful interventions and promote healthy daily behaviors, peer support offers a viable solution.

Helping with social and emotional support

The emotions a chronic illness can trigger are varied and complex and range from anger to fear to exhaustion to guilt. Depression alone is estimated to impact almost one third of persons with a serious medical condition.⁸ A study isolated to members of the bleeding disorder community noted that 37% of men surveyed about their hemophilia reported experiencing depression.⁹

These feelings can fluctuate over the course of the illness and are usually beyond the capabilities of any single doctor’s office not versed in training patients on how to cope with their illness. In fact, an article in Social Science & Medicine studying chronic illness and mental health notes, “Data highlighted the significance of the physician’s emotional support as the most sought for yet least attainable resource in alleviating distress”¹⁰ Here, peer support has proven itself a great asset.

Since emotional support is difficult to encourage, peer support often begins in answering questions and providing information, but gradually evolves into the more meaningful emotional support once trust is built over time.¹¹ In studying the advantages of peer support for mental health, one trial that employed peer supporters for 12 months in primary care facilities demonstrated a 30% decrease in the prevalence of common mental disorders and, more strikingly, a 36% decrease in suicide attempts.¹² Clearly, peer engagement with patients resulted in a measurable and very positive outcome.

However, the ability to reach emotionally struggling patients can be difficult, but as one study uncovered, emotional support can be effectively delivered implicitly via conversation and activities, concluding that explicit and implicit emotional support are varied dimensions of the same thing and are facilitated by the trust developed through extended peer support engagement.¹³ A key goal of peer support is, indeed, to build relationships through trust and not necessarily expertise.¹⁴

The bleeding disorders community illustrates these multi-faceted degrees of peer support. The integration of persons with bleeding disorders supporting other persons with bleeding disorders is well known in the community: community members serve as local bleeding disorder chapter directors and are in leadership roles at the national organizations like National Hemophilia Foundation, Hemophilia Federation of America, and The Coalition for Hemophilia B.

A team of physicians in British Columbia endorses patient navigators and peer-to-peer mentoring as playing “a critical role” towards motivating treatment adherence, aiding in appointment attendance, assuring insurance coverage, and assisting with medication refills, resulting in positive “adherence outcomes.”¹⁵

Additionally, persons with bleeding disorders serve as peer support within the specialty pharmacy and drug manufacturing spaces. Nationwide specialty pharmacy BioMatrix, for example, employs many persons with bleeding disorders as CHWs and PSSs who guide families through the nuances of managing the expensive and demanding disease.

For many families, their CHW or PSS becomes the touchstone for the varied supports of medicine, healthy behaviors, and emotional stability. BioMatrix also extends peer support through an education division that provides resources from understanding insurance, appealing claims, navigating disability, or providing creative outlets for the inherent stressors of a chronic illness—all of which strengthens the social and emotional support system for the patient. In turn, the value-give lends to a more positive patient experience and healthy outcome.

Helping Link Patients to Care

Another role that peer support plays is linking patients to care, especially for those in remote, rural areas, those that peer programs refer to as “the hardly reached.” As Peers for Progress notes, this function of peer support is meant “to help bridge the gap between the individuals and health professionals.”¹⁶

The Peer & Family Career Academy in Arizona offers one example of this at work. The group employs PSSs who have recovered from mental illness to service the remote Arizona counties, and the peer supporter assists with things such as completing paperwork related to their illness, offering transportation, and connecting persons with community resources.¹⁷

North Dakota benefits from the same program, and their regional director enthuses about the benefits of the program, noting how peer support “is a wonderful opportunity to bridge some unmet service gaps,” adding that the program “addresses some of the unique needs of the population by having someone who brings that lived experience.”¹⁸

Providing Ongoing Support

Another key marker of a successful peer support program is its ability to provide ongoing, extended support. An effective peer support program is designed to be mindful that chronic illness is forever. Reinforcing the care of the chronically ill over a lifetime should be the goal.

To address the need for ongoing support, health care providers in China, in conjunction with the Chinese Diabetes Society, developed more than 30 community-centered education and outreach programs. In one instance, retired persons with diabetes led peer support groups that emphasized the obstacles to daily self-management and they formed common interest groups that joined for walking and shopping. Compared to controls, this group experienced significant benefits in body mass index reduction, blood pressure, and blood glucose counts.¹⁹

Computer and web-based resources can also serve as methods of ongoing support through peer programs. Virtual programming connects peers to patients. Vetted Facebook groups are another way that patients with chronic illness can connect with each other and it is a viable tool for peer supporters to connect and disseminate valuable information to patients.

Linking patients to apps can also reinforce healthy behaviors over the long term. An Australian-created telephone tree, TLC Diabetes, provides messages and reminders for patients with diabetes. Participants witnessed statistically relevant improvements in quality of life indicators over the control group.²⁰

However, many peer support programs must cap their interventions because of limits in workforce or time. Therefore, some programs institute monthly meetings and/or phone support only, so although assessments find them helpful, they also label them as lacking in providing ongoing support.²¹

This research suggests the necessity of a multi-faceted implementation of peer support, including frequent group meetings of more than once monthly, outreach educational programming, and non-chronic illness-related conversation and activities.

Economic Benefits of Peer Support

Studies and research provide ample evidence of the success peer support programs can have on patient adherence, daily maintenance, emotional support, and outreach. Moreover, investigation into the economic advantages of peer support indicates strong gains when comparing peer support programs against control, non-peer supported care.

One study set out to directly measure the return on investment for CHWs. The study followed almost 600 underserved men, all of whom required uncompensated care. Following their use of primary, specialty, and urgent care services for 9 months before and after peer support, the study concluded that CHWs prevented $14,224 per month in care—or $95,941 per year. Given that the program cost was $6229 per month, the study estimated ROI at 2.28:1, not an insignificant amount.²²

Another cost-analysis study forecasted quality of life (QALY) and estimated that, within the Latino diabetic population of their study, peer support interventions gained $10,995-$33,319 in savings each year when compared with usual care.²³

A more myopically focused look at cost-effective analysis noted an almost $300 drop in medication needs ($1542 per month vs the average $1821) for peer supported diabetes interventions.²⁴ Assuming a certain amount of out-of-pocket expenses for the patient, this metric alone indicates an immediate financial advantage of peer support to the patient.

Although these numbers alone show economic advantages to providers, the health care system, and the patient—numbers are not patients, but when positive outcomes exist on both sides of the equation—patients with better health care outcomes and a health care system with a reduced burden—it’s a win for everyone.

Conclusion

For persons with a chronic illness, adherence to care plans is required for optimum outcomes and peer support leans into actualizing external factors that facilitate better care plan adherence. Peer support provides a holistic, wraparound care model that offers support for a variety of needs, including insurance coverage education, financial support, care access, emotional distress, coping strategies, and remote geographies.

Dating back to a study in the 1950s showing that “contact comfort” is vital for health and extending into the growing Peers for Progress research, peer support programs have come a long way, but they still have much room to grow.²⁵

Peer support is a practical solution for best possible outcomes and nothing else is equally substitutable for peer-to-peer communication and support. Therefore, it should become a critical part of proper chronic illness care. By engaging peer support for their patients, centers of excellence that manage chronic illness, including specialty pharmacies, can be part of the solution.

About the Author

Shelby Smoak, PhD, advocate and education specialist, BioMatrix Specialty Pharmacy.

References

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2. Fischer, Edwin B, et. al. “Contributions of Peer Support to Health, Health Care, and Prevention: Papers from Peers for Progress.” Annals of Family Medicine. Aug. 2015. https://www.annfammed.org/content/13/Suppl_1/S2.
3. Peers for Progress. “Defining Peer Support.” http://peersforprogress.org/resource-guide/define-peer-support/.
4. Marino, Patricia, et. al. “Peer Support to Promote Medication Adherence Among People Living with HIV/AIDS: The Benefits to Peers.” Social Worker Health Care. 45.1 (2007). 67-80. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5096452/
5. Kanters, Steve, et. al. “Use of Peers to Improve Adherence to Antiretroviral Therapy: A Global Network Meta-Analysis.” Journal of the International AIDS Society. 19.1 (2016). https://onlinelibrary.wiley.com/doi/full/10.7448/IAS.19.1.21141
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7. Abeypala, Udani. “Tell Your Story: Personal Accounts of Peer Support.” Peers for Progress. http://peersforprogress.org/wp-content/uploads/2014/11/141111-tell-your-story-personal-accounts-of-peer-support.pdf
8. Lindberg, Sara. “How a Chronic Illness Affects Your Mental Health.” Patient Info. 29 Sept. 2017. https://patient.info/news-and-features/how-a-chronic-illness-affects-your-mental-health
9. Colorito, Rita. “Putting the Spotlight on Mental Health and Bleeding Disorders.” HemAware. https://hemaware.org/mind-body/putting-spotlight-mental-health-and-bleeding-disorders
10. Ben-Sira, Zeev. “Chronic Illness, Stress and Coping.” Social Science & Medicine. 18.9 (1984). https://www.sciencedirect.com/science/article/abs/pii/0277953684900984
11. Fischer, Edwin B., et. al. “Key Features of Peer Support in Chronic Disease Prevention and Management.” Health Affairs. Sept. 2015. https://www.healthaffairs.org/doi/10.1377/hlthaff.2015.0365
12. Patel, Vickman, et. al. “Lay Health Worker Led Intervention for Depressive and Anxiety Disorders in India: Impact on Clinical and Disability Outcomes Over 12 Months.” British Journal of Psychiatry. Dec. 2011. https://pubmed.ncbi.nlm.nih.gov/22130747/
13. Kowitt, Sarah D, et. al. “Emotional Support for Diabetes Management: An International Cross-Cultural Study.” The Science of Diabetes Self-Management and Care. Feb. 2015. https://journals.sagepub.com/doi/abs/10.1177/0145721715574729
14. Peers for Progress. “Defining Peer Support.” http://peersforprogress.org/resource-guide/define-peer-support/
15. Thornburg, Courney, and Natalie Duncan. “Treatment Adherence in Hemophilia.” Patient Prefer Adherence. 11 (2017). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5630068/
16. Peers for Progress. “Defining Peer Support.” http://peersforprogress.org/resource-guide/define-peer-support/
17. Mead, Allee. “Peer Support Specialists Care for and Connect Rural Behavioral Health Clients.” The Rural Monitor. 6 Feb. 2019. https://www.ruralhealthinfo.org/rural-monitor/peer-support-specialists/
18. Ibid.
19. Fischer, Edwin B., et. al. “Key Features of Peer Support in Chronic Disease Prevention and Management.” Health Affairs. Sept. 2015. https://www.healthaffairs.org/doi/10.1377/hlthaff.2015.0365
20. Ibid.
21. Ibid.
22. Whitley, Elizabeth M., et. al. “Measuring Return on Investment of Outreach by Community Health Workers.” Journal of Health Care for the Poor and Underserved. 1.17 (2006). https://chwcentral.org/wp-content/uploads/2014/01/Whitley-Return-on-Investment-CHWs.pdf
23. Brown, H. Shelton, et. al. “Cost-Effective Analysis of a Community Health Worker Intervention for Low-Income Hispanic Adults with Diabetes.”Preventing Chronic Disease. 2012. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3475531/
24. Fischer, Edwin B., et. al. “Key Features of Peer Support in Chronic Disease Prevention and Management.” Health Affairs. Sept. 2015. https://www.healthaffairs.org/doi/10.1377/hlthaff.2015.0365
25. Fisher, Edwin B., et. al. “Chapter 11: Peer Support.” Peers for Progress: UNC, 2018: 133-146.