I sat in awe listening to how an individual with multiple health conditions and schizophrenia had gone from being a frequent ER visitor who would then be admitted due to his mental health condition down to almost no (as in zero) ER visits. What was the amazing intervention, process, or treatment that made such a huge impact? It was another person with schizophrenia trained in peer support who visited him at home and worked with him to understand why he kept ending up at the hospital. One of the main interventions came down to putting a sticky note on his bathroom mirror to remind him to take a new medication.
A year or so later this scenario came flashing back to me when I walked into the observation room for a focus group on a smoking cessation video. We’d worked on it with people who had smoked for years and with renowned experts in smoking cessation. So, we felt pretty good about it.
The focus group participants loved that the video normalized multiple quit attempts, gave realistic strategies, and didn’t sugarcoat how difficult it is to quit. But, they still felt judged by the off-screen narrator — like they were hearing from someone who didn’t get it — and who hadn’t lived through it.
Ironically, the voice talent was a former smoker who had struggled through multiple quit attempts. We decided to ask her if she’d disclose that at the beginning, and if she was comfortable saying “we” and “us” instead of “you” — so people would know they were hearing from a peer. She did, and the next iteration had a much warmer reception.
It matters. A doctor, nurse, health coach, family member or close friend can all stand with people as they navigate a health condition or treatment — but they are next to and outside of the lived experience. And even though they’re usually rooting for us and not judging us — people often feel shame, fear, or embarrassment, or are just overwhelmed.
See it to be it
It’s also hard to summon the belief that we’re capable of a new self care task like injecting insulin, caring for an ostomy, or making dietary changes. It takes energy to do something new or change — so that confidence and belief that we can do it is critical.
With peers, there’s a “see it to be it” benefit. We get the inside story on how they made real change. We see it’s possible in the real world, and not some idealized patient world. And that creates hope and belief.
We step into a shared experience; the seesaw levels out and comes to rest.
This creates collaboration and engagement; and can help address the social isolation that often accompanies a new diagnosis or progressive health conditions.
No longer limited by in-person interactions and geographic location, peer support is increasingly being done virtually and remotely. Organizations that focus on specific health conditions the Crohn’s Colitis Foundation offers programs like the Power of Two , which matches people or their care partner (family caregiver) with a trained, volunteer peer mentor. Then they connect through calls and messages.
After his own family benefitted from another patient’s insights, Dr. Ashwin Patel founded InquisitHealth. They train people who are successfully managing a chronic condition to educate and support others with that condition as peer mentors. Peers are matched based on language, culture, age, and life experiences. The mentors also get insights from a health and social determinants assessment, so they can understand barriers and tailor their support. Coaching takes place by phone. And mentors can escalate issues to the patient’s PCP or health plan, or directly to social workers, pharmacists, or other experts.
People want their experiences to help others.
And peer mentors gain confidence as they take on more coaching, often with increasing complexity.
This isn’t just giving people a warm feeling, it creates self-efficacy and outcomes. For example, 172 people with diabetes participated in peer support, connecting with their mentor about 32 times. Each patient set about 10 goals, and those with complete A1c data had a 1.7 point average drop in A1c.(1) This approach is also being used for people with hypertension, asthma, and sickle cell, in partnership with organizations like the National Kidney Foundation and the Crohn’s Colitis Foundation.
Peer support is also evolving and maturing on apps. When journalist Boaz Goan’s father was diagnosed with cancer — their family was well connected to physicians and research centers, his father was even the president of the Israel Cancer Association — but, as Boaz put it, “It was maddening to try and find a peer for him to talk with. I couldn’t find anything that was effective, quick, and not insulting. And we felt increasingly alone and isolated.” Eventually, his father was connected with someone who was also a businessman, so they had a common language and challenges and could connect.
Boaz published an article about how hard it was to find this kind of supportive connection. An avalanche of responses came back — others asking for help and those with lived experience who wanted their wisdom to benefit others. So he created Wisdo, an app based on solidarity and helpfulness. Boaz noted: “Part of the problem is finding someone who is helpful vs unhelpful.” So, in about 20 clicks people indicate if they’re dealing with: anxiety, insomnia, social isolation, etc. and if they’ve “been there” or are currently experiencing it and “there now.” Then they’re connected with an appropriate community and get help creating goals.
Some preliminary results show this type of online peer support reduced mental and physical illness measures by 26% within 90 days as measured by the Health Related Quality of Life: HRQOL. And there was a 19% reduction in rates of social isolation as measured by the UCLA-3 Loneliness scale.
As peers provide insights, others rate how helpful they are. Those who are helpful can apply to be a guide; and over time they can progress from a helper to a superguide. Like with all peer mentoring, those who become mentors benefit even more than those being helped — and experience almost twice the number of healthy days.
Training Peer Mentors Online
A recent study conducted by Dr. Karen Fortuna at Dartmouth published in the Journal of Participatory Medicine shows peers training can also be delivered virtually.(2) Emotional CPR (eCPR), which trains community members from diverse backgrounds to support others through mental health crises, took their training online in 2020. The study was especially interesting as they trained not just peer support specialists, but clinicians, family members, and nonprofit leaders.
The team found this training improved participants’ abilities to identify emotions, support others in distress, communicate nonverbally, share emotions, and take care of themselves, as well as to one’s feelings of social connectedness, self-perceived flourishing, and positive affect. They also found promising evidence this training may also impact loneliness, empowerment, active-empathetic listening, mindfulness awareness, and hope.
Peer support gives back to everyone: those who are trained in it, become mentors, those who receive it, and care teams looking to do more for those they care for. It’s not just a nice way to cheer patients on; it’s a powerful tool to improve understanding, create belief and motivation, and help address social isolation and challenges. Peer support should be a standard part of the care plan.
——————–
1. Courtney R Lyles, Urmimala Sarkar, Urvashi Patel, Sarah Lisker, Allison Stark, Vanessa Guzman, Ashwin Patel, Real-world insights from launching remote peer-to-peer mentoring in a safety net healthcare delivery setting, Journal of the American Medical Informatics Association, Volume 28, Issue 2, February 2021, Pages 365–370, https://doi.org/10.1093/jamia/ocaa251
2. Myers AL, Collins-Pisano C, Ferron JC, Fortuna KL. Feasibility and Preliminary Effectiveness of a Peer-Developed and Virtually Delivered Community Mental Health Training Program (Emotional CPR): Pre-Post Study. J Particip Med 2021;13(1):e25867. doi: 10.2196/25867. PMID: 33661129 PMCID: 7974761
