Peer supporters are becoming a front line force against diabetes

Today the global community is seeing a growing number of people with diabetes, but a shortage of endocrinologists to treat them. According to new studies, the real solution to the chronic condition sweeping the U.S. and the world may go beyond doctors and drugs.

If managing diabetes is about patients making choices and taking personal responsibility, the key to controlling diabetes lies on layers of human connection, experts told Endocrine Today.

“It’s time for us to realize that health [care] sometimes is outside the health sector,” Jean-Claude Mbanya, MD, PhD, FRCP, of the University of Yaoundé, Cameroon, immediate past president of the International Diabetes Federation, said. “It’s just like the causes of diabetes — the way we build our cities and our schools, what we eat and what we do. In the management of such a disease, we need to integrate multiple factors, and one of them is peer support.”

Through a grant awarded by Peers for Progress — a program of the American Academy of Family Physicians Foundation dedicated to promoting peer support as a part of health care and prevention everywhere — Mbanya leveraged his most well-controlled patients with diabetes to become “peer supporters” and establish a prosperous intervention for those less successful.

“All of us have very good patients in our clinics who have had diabetes for so many years, or people in the community who are very influential, who we could use to assist us in the management of diabetes,” Mbanya said.

The Health of Population in Transition Research Group led by Mbanya was a proof-of-concept for implementing a community-based, multi-level peer support intervention that could apply to low- or middle-income populations. Mbanya and colleagues matched 96 adults who had poorly controlled diabetes with 10 trained, volunteer peer supporters with controlled HbA1c.

“We had training in terms of capacity-building to support people with diabetes; we improved their general knowledge about diabetes; we gave them communication skills and then used their personal history as examples,” Mbanya said.

The researchers followed patients for 6 months to evaluate outcomes and self-management behavior. Improvements were seen in HbA1c, fasting plasma glucose and BMI for all patients.

“We asked ourselves, ‘What are we not doing right that peer supporters are?’” Mbanya said. “We interviewed the patients and they said ‘They spend more time with us, they talk to us, we do things together, we meet in church, we meet in the cultural group and they give us words of encouragement when we come to the clinic.’”

Peer support connects people with chronic conditions like diabetes so they can learn from someone else’s experience. It is an ongoing process that changes frequently, according Peers for Progress, and can take many forms. The organization looks to cooperate with and improve other health care services through real-world community and assistance on an emotional level.

Adopting peer support does not mean replacing endocrinologists, Mbanya noted, but strategically tapping on strengths of people already rooted in respective circles to create comprehensive teams that will support patients in reaching their goals.

“Peer supporters are the champions we need in our communities in order to propagate social messages,” Mbanya said. “They are people to help in the management of diabetes or help in the prevention of diabetes.”

These people can be anyone from patients to school teachers, Mbanya said. The important piece is they have been indoctrinated and they have knowledge to impart.

“If it’s too late for you and me, it’s not too late to do something to save the next generation so they don’t make the same mistakes we made, and in doing so, we have to engage the help of our communities,” Mbanya said. “Together we can become stronger, and everybody counts.”

Creating a model of care

Creating an effective model of diabetes care delivery that supports patients in successfully managing their condition is the goal for Kellie Rodriguez, MSN, CDE, director of Diabetes Education and Community Engagement at UT Southwestern.

“What do we have in place to help patients when the provider has given the best prescription, the nurse has given the best information about monitoring, and the dietician has given the best advice about nutrition?” Rodriguez asked. “Diabetes is a complex disease and how do we help a patient to implement that information to be more effective in their lived world?”

Rodriguez views the roles of peer supporters and community health workers as an “enormous opportunity” to promote optimal patient diabetes self-management behavior in-between health care visits. The difference between community health workers and peer supporters may be that while both can assist patients in accessing required care and community resources, the latter can relate on a personal level, living with the disease, she explained.

“A community health worker is likely to have more health knowledge and could have relevant cultural similarities,” Rodriguez said. “A peer supporter has diabetes, so they’ve got that connection in terms of the disease process. Both of them represent important layers in chronic disease management in the health care system.”

There is no formula for pooling a well-rounded network, and it will likely vary by geography and population. However, Rodriguez said a layer of people who know the community and can help patients access the recommended food, medicines and supplies, and exercise is needed.

Rodriguez believes a layered health care system is needed to make a difference in the world of diabetes management. Most efforts until now have concentrated on medical, health service, hospital and clinical arenas — ideal for treating acute illnesses, she said, but inherently designed for events that happen now and have immediate solutions.

“Diabetes is a chronic disease, and it really needs to have a chronic disease mindset,” Rodriguez said. “You don’t manage diabetes in a health care office. You essentially manage diabetes in a patient’s ‘lived’ world, in their home, their school, their work environment.”

Affordable Care Act implications

With the introduction of the Affordable Care Act (ACA), the U.S. government has tapped peer support as one of the tools for extending health care into communities where people are dealing with diabetes.

“The Affordable Care Act includes several provisions that really could make a difference for peer support programs and community health workers,” Amy Katzen, a former clinical fellow at Harvard’s Center for Health Law and Policy Innovation, said. “Some parts of the law are targeted specifically for this, and a wider group of provisions could have really exciting effects on the field.”

One aspect of this law is a decision by the CDC to provide authorization for funding for these programs. Although the appropriation did not happen yet, “it set a really positive precedent,” Katzen said.

The ACA also authorized the creation of National Health Care Workforce Commission; this includes peer supporters and community health workers. This commission also has not yet received its appropriation, but Katzen said “it really raises the national profile of these roles as a workforce matter.”

Already in existence throughout the United States, Area Health Education Centers charged with remediating health care access are newly tasked with training individuals to serve at this layer of support. “This is happening nationally, and the centers are getting increasingly involved,” Katzen said.

Other provisions do not spell out the terms “peer supporters” or “community health workers,” but Katzen said their content clearly shows forward motion.

With the ACA focused on quality care as much as access to care, and hospitals having what Katzen called a “carrot-stick situation” to reduce the number of preventable hospital readmissions, a follow-on motivation exists to engage communities to keep patients from returning.

“Community health workers are extremely well-positioned to do the work needed in the home to connect patients back to their primary care and outpatient care so readmissions don’t take place,” Katzen said. “Hospitals have an incentive to bring in peer supporters to help patients with their transition back to the community so they don’t end up back in the hospital.”

The ACA also strengthens the specifics around charitable activities required by non-profit hospitals to maintain their designation — something Katzen noted was not aggressively enforced simply because standards were not set.

“The idea of hospitals offering community benefits is not new, but the oversight of it is,” Katzen said. “Now, we have hospitals providing peer supporters and community health workers to the community as part of their benefits work.”

Patient-centered Medicaid homes and medical health homes is another area of concentration in the ACA, which involves a “primary care transformation concept” and requires this layer of support, Katzen said.

“They want people to have care that is well-coordinated, especially for people with chronic illness like diabetes, many of whom have co-morbid conditions and psycho-social complexities,” Katzen said.

Through a relatively new innovation branch of the CMS, the ACA is funding demonstration projects and studying ways to coordinate and pay for care.

“In the scheme of the ACA, this is not where most of the money is, but in the scheme of money that used to exist for this kind of thing, it’s a massive infusion of resources,” Katzen said.

So far, six states received State Innovation Model grants to run their own programs. Five — Arkansas, Maine, Minnesota, Oregon and Vermont — are explicitly bringing in peer supporters, community health workers and similar roles.

“The ACA didn’t require this to happen, but it created the conditions for states to create these pilots,” Katzen said. “This gets to the fundamental notion that these roles are being integrated into care teams and the broader health care system, which brings a lot more access to those services for a lot of people.”

Lastly, the ACA rollout raised the profile on diagnostic and screening tests given top grades by the United States Preventive Services Task Force (USPSTF) and, therefore, covered for adults under most insurance plans. It also underscored Medicaid’s terminology in the Social Security Act, which delineates coverage if “recommended by” a licensed healthcare provider.

Available for reference online at the USPSTF site, covered preventive services include diabetes and gestational diabetes screening, healthy diet counseling and obesity screening and counseling for adults and children.

“The fact that the ACA brings these services to the forefront, and then creates an opportunity for states to really expand who is providing those, is amazing because it’s really expanding access,” Katzen said.

Evidence-based changes

Findings from several studies demonstrate the power of peer supporters and community health workers in helping patients with diabetes — particularly in minority populations or low socioeconomic backgrounds.

Tricia Tang, PhD, of the University of British Columbia, Canada, and researchers at the University of Michigan, Ann Arbor, discovered patients with type 2 diabetes achieved key outcome improvements through peer leaders or community health worker interventions, following a 6-month diabetes self-management education (DSME) program.

“Our current health care system has a shortage of health care professionals and financial resources for health care professionals like nurses and doctors to provide the intensive between-clinic visit follow-up that some patients need,” Tang said. “To promote lifelong diabetes self-management efforts, we can look towards individuals in our own communities as valuable and low-cost sources for self-management support.”

The researchers evaluated 116 Latino adults with type 2 diabetes, recruited from a federally qualified health center, who were randomized to weekly face-to-face group sessions (telephone calls for those unable to attend) with peer leaders or monthly telephone calls with community health workers. At the end of 12 months, the low-cost maintenance programs resulted in significant reductions in HbA1c for patients in the peer leader group (from 8.2% to 7.5% or 66 mmol/mol to 58 mmol/mol, P<.0001) and the community health worker group (from 7.8% to 7.3% or 62 mmol/mol to 56 mmol/mol, P=.0004).

This study provides evidence that patients can maintain long-term diabetes-related health gains from short-term education programs, Tang said. She pointed to two conditions critical for effective implementation of such programs: rigorous training followed by high-quality supervision and an interdisciplinary, team-based approach to patient care.

“Community health workers and peer supporters need to be integrated into the health care team working with endocrinologists, primary care physicians, nurses and other allied health professionals,” Tang said. “Experience with these programs suggests these roles serve to help the rest of the team better understand their patients and provide care better tailored to individual needs. Each member of the team plays a critical and unique role.”

In San Diego, the Project Dulce collaboration between the city’s health care and community organizations trains peer volunteers to provide DSME. Thousands of ethnically-diverse patients have received help at locations throughout that region, and the “chronic care approach” serves as a model across the United States.

Evidence on the effectiveness of the 15-year-old program has been published in journals and presented at medical conferences. More promising data is coming out of a still-ongoing study dubbed Dulce Digital, which looks at text messaging as a tool to support low-income Latinos in their self-management.

For the randomized intervention, Athena Philis-Tsimikas, MD, corporate vice president at Scripps Whittier Diabetes Institute, and colleagues recruited 116 Latinos with type 2 diabetes and HbA1c >7.5% from federally qualified health centers. Text messages — educational/motivational, medication reminders or blood glucose monitoring prompts — were sent two or three times daily to start, with frequency tapering over 6 months.

An interim analysis based on 71 patients showed significantly greater decreases in HbA1c with text messages compared with usual care only (9.4% to 8.7% vs. 9.5% to 9.4%, P<.05). At 6 months, the improvements were sustained, with Dulce Digital participants still achieving better outcomes.

“We can infer patients are getting the text messages, reading the text messages and checking their blood glucose; we can see these patients are actually engaged,” Philis-Tsimikas said. “We were able to circumvent many of the barriers that patients face, such as lack of transportation or child care, while still being able to expand the reach of diabetes care and education.”

Looking ahead, Philis-Tsimikas envisions conventional DSME programs incorporating text messaging, with patients receiving the mobile communication as supplements and ongoing reminders following one-on-one or group visits.

“It is exciting to find simple and effective approaches to improving chronic conditions,” Philis-Tsimikas said.

Taking action

The merit of developing and implementing these programs is documented in the report Peer Support in Health — Evidence to Action compiled by Peers for Progress, in conjunction with the National Council of La Raza, and released in April.

The findings came out of the first National Peer Support Collaborative Learning Network, a conference in November that convened leaders in health care and peer support to discuss strengths and needs.

“The main point that emerged from meeting, and became clearer as we assembled the report, is that we need to move away from a single protocol being implemented by peer supporters and toward comprehensive programs that reach the entire population of people with diabetes and chronic disease,” Edwin Fisher, PhD, the global director of Peers for Progress, said. “That means there needs to be a variety of peer support and related supportive services available.”

Phone calls, text messaging, group medical visits, home visits, online services, individual coaching and counseling and even grocery shopping are examples of services that can educate patients and guide self care between visits, Fisher explained.

“Peer support is an actionable, feasible strategy that cooperating health systems or primary care practices can provide to help people do critical things, like adhere to a medication plan, or complement the plan with healthy diet and physical activity,” Fisher said. “Nobody’s going to be perfect. But they’ll do better with a peer support program, giving them encouragement in those areas.”

Peer support programs tend to be viewed as “frivolous and feel good,” Fisher said, or “nice things for people to do if they feel like it ... but nothing really consequential results.” But the professor of health behavior at University of North Carolina argued this perspective is misguided — particularly in terms of diabetes.

“Many problems in diabetes are preventable if they are caught early, most notably amputations,” Fisher said. “One of our mottos is ‘peer supporters should help foot ulcers be outpatient visits rather than surgeries.’”

The results do not stop there, Fisher said: “These programs can have really strong impacts on health care costs, but they need to be taken seriously and done well.”

When designing peer support programs, Fisher said it is important that specialists be involved to ensure high quality and alignment of tasks assigned to team members. With well-trained and supervised peer support, and the right back-up, he contends real contributions can be made.

Because endocrinologists are influential, taking part of the creation and implementation of peer support programs could play a pivotal role in the overall success, Fisher said, and ultimately the health of patients between visits.

“Busy endocrinologists see patients in their offices and give them the best medical plan they can,” Fisher said, “but are totally aware that what’s going to determine a large part of the success of that is what patients do in the 8,760 hours a year they are not with a doctor, nurse or patient educator.”

The first step is recognizing peer support enhances the practice of endocrinologists, Fisher said. “If patients are getting the resources and support they need between visits, they’re going to do better, respond better to medicine and other treatments and make the life of endocrinologists easier. As one doctor put it, ‘with all these resources for my patients, I get to practice medicine.’”

Next, endocrinologists can advocate for these programs, whether they are part of a multi-specialty clinic or a large HMO, Fisher added. “Specialists need to be advocates that these kinds of programs are good for patients, good for the health system and ultimately good for the health system’s bottom line.”

As endocrinologists link into more comprehensive care strategies that include peer support, Fisher said remaining engaged is top priority.

“Peer supporters are responsible, resourceful people; if they see a problem they’re going to try to do something to address it,” Fisher said. “If they have the resources, they will address the problem well. That really starts with specialists and works through primary care and nursing.”

The Peers for Progress and the National Council of La Raza collaboration is gaining momentum and making strides quickly. The groups gathered researchers and international thought leaders in late June for another in-depth dialogue — “Peer Support: Evidence and Directions Forward” — from which a report will be issued detailing how programs can reach populations that frequently fail to engage and how health systems can bring peer support programs into their communities.

“The time is right for a longer discussion on the health benefits of peer support,” Fisher said. “With the implementation of the ACA in the United States and the pressing need for greater community and clinical health initiatives worldwide, these programs stand ready to improve lives, improve health and reduce costs.” – by Allegra Tiver

Do you think peer support programs are applicable to every community population?

In looking at the different diabetes communities, as well as the different social, ethnic and cultural communities, peer support could be useful. Diabetes management, as in other chronic disease management, clearly differs from one community to another, and you need to make it applicable to the needs of that specific community.

Peer support could be beneficial for patients with type 1 or type 2 diabetes, and it may even have a role in the rarer varieties, such as cystic fibrosis-related diabetes. Type 1 and type 2 diabetes are very different disease processes.

With type 1, the population literally grows with the disease process, in terms of chronological age with duration of diabetes, and their needs change, so diabetes management is different at every stage. Patients have certain needs as children, adolescents, then different needs as women plan or go through pregnancies, and still different needs as they age. Social and peer networks play into long-term success.

Patients with type 2 diabetes require peer support because this is a disease process where self-motivation and self-discipline are key in bringing about the best outcomes. Anywhere you have lifestyle changes, with diet or exercise being the core measures of diabetes success, anything that helps patients stay motivated and on track, both in between visits and in the long term, will be highly successful.

Diabetes is very much a day-to-day condition — a constant struggle or success for various types of people in various life circumstances. Depending on where patients fall on the spectrum, they may need more or less support from their social groups.

Patients certainly benefit from coming to their physician or other team provider visits and the episodic care that they receive, but they need constant support between those visits for the benefit and outcomes to be sustainable.

Peer support may have more implications in culturally or linguistically diverse communities secondary to their inherent diversity in diet, financial resources, access to transportation, literacy and numeracy, cultural traditions etc. Having the option of peer support programs will certainly improve outcomes in these populations.

In general, peer support harnesses the support that social networks bring to improve diabetes outcomes and make diabetes management more successful.

Shubhada Madan Jagasia, MD, MMHC, is associate director, clinical affairs, and professor of medicine at Vanderbilt University. Disclosure: Jagasia reports no relevant financial disclosures.

Not only are there very different types of diabetes with different demands, but very different type of people and different age groups. That changes the need for a peer to support and educate.

For children with type 1 diabetes and their families, there is virtually a universal need to have a peer and peer family to relate to because it’s so transformative for everyone’s lives. There really is no doctor or nurse who can provide enough information to make up for the incredible comfort from having a peer who is in the same situation. There are very intimate and emotionally-laden aspects with this disease, not just for the child, but the mother, the father and the siblings, all of whom can benefit from having peers who have been in their shoes.

At the other extreme, an older business executive who has been told he has type 2 diabetes has an important additional consideration in his busy life, but it is not nearly as transformative as type 1. He may not need to do a lot of self-monitoring of glucose, he may not need to do any injections, and he may not be at any risk of hypoglycemia. Therefore, he may not have the inclination nor the need for peer support. For some people, it may be intrusive and something they do not have time to do.

Somewhere in between are women with diabetes, who are either trying to get pregnant or already pregnant. These women have a lot to do, with so many responsibilities and maybe kids; many would probably benefit from peer support but may be the ones with the least amount of time for it. Their access to peer support may be limited just by the logistics of their lives.

As we think of peer connectedness, it is not always for everybody. But when it is what’s needed, there really is no alternative.

When the circumstances call for it, peer support can help patients realize “I’m not alone, I’m not crazy, my feelings are not strange, this is a human condition and my peer, my buddy, will help me cope with it” — just as friends do in life, by giving us context, reflection and feedback.

Daniel Einhorn, MD, FACP, FACE, is medical director, Scripps Whittier Diabetes Institute; clinical professor, Medicine at University of California at San Diego; and immediate-past president, American College of Endocrinology. Disclosure: Einhorn reports no relevant financial disclosures.