“I’m going to get a boyfriend,” said 57-year-old Mariana, a shy smile flashing across her face as she set her first goal. I was leading a diabetes support group at the Cambridge Health Alliance Revere Family Care Center, a health center near Boston that serves a community afflicted with addiction, chronic disease, and violence.
Over the last three weeks, Mariana — whose name has been changed for patient privacy — had shared her heartbreaking loneliness with the group. Her husband had left her for another woman. Her children had grown up and moved away. She no longer felt like she had a reason to get out of bed most days. Gently but firmly, I watched as the other patients told her something no professional would have dared: that her children and husband were never going to come back, that they had their own lives now, that she needed to move on with her life. Her declaration came in this context — a bold, brave step about what she needed to do to heal. Her choice had little to do with the medical specifics of her diabetes and everything to do with what she needed to thrive as a person.
The group helped her create a specific plan to broaden her circle of relationships. She would start with going to church, a place she had found solace before, for the first time in years that Sunday.
As the primary care doctor in the group, I admit that my heart sank a little. Mariana’s blood sugar had been in the 400s every day for decades — 300 points over normal — and it acted like a poison in her body, wreaking havoc on her blood vessels and nerves. She was already beginning to develop blindness and couldn’t feel her feet anymore, leaving her susceptible to life-threatening infections. She had spent hundreds of hours on medical visits and nutrition appointments, to no avail. Getting a boyfriend felt impossibly distant from the medical matters at hand. But as a group, we had committed to helping each person reach their goals, however they defined them.
A month later, when the group met again, Mariana nearly danced in, eager to give her report. She had gone to church and met a wonderful man. She had asked him out for coffee and felt hopeful for the first time in years. Six months after that, her diabetes was under perfect control, for the first time in decades.
Mariana knew what she needed to get healthy: a reason to get out of bed. In this context, she was able to use the information she had gathered over the years to improve her own health.
I saw other, similar stories play out in that group. One man decided he needed to get teeth, which helped him eat more healthily but also helped him feel confident enough to get a job — meaning he didn’t spend hours at home drinking. For another, it was having the courage to admit that she had an addiction that she needed to overcome.
AA tsunami of chronic disease is crashing upon our country. The cost of prediabetes and diabetes, according to the American Diabetes Association, is currently $322 billion a year, and expected to rise to $500 billion by 2020 as our population ages and becomes more obese.
Behavior change is critical to stemming this trend, but unfortunately, the American medical system is ill-equipped to take this on. Much of our current medical approach focuses on simply telling people what they need to fix — their diets, exercise regimens, smoking habits — with little support in the “how.” Doctors and nurses receive little formal training about how to help patients change behavior. The traditional medical visit, which lasts fifteen minutes and focuses on medical facts, often doesn’t allow space for effective behavior change approaches. And medical practices do not routinely screen for social drivers of health, such as housing, education, and financial stress — all of which can prematurely cause chronic illness.
At the Cambridge Health Alliance, where I work, I began asking people with diabetes what they needed to really improve their health. They were appreciative of what were already doing to support them, like proactively sending reminders, publishing health-literacy friendly educational materials in multiple languages, and offering a patient portal to look up and graph their test results. We had been able to improve the outcomes for underserved patients to above the national 90th percentile — an A grade by any standard.
However, I soon learned these patients’ needs were, by and large, outside of what we were offering. They needed cooperatives for fresh fruits and vegetables so healthy eating could be affordable, walking partners so they could exercise and feel safe in neighborhoods rife with random violence, low-calorie recipes that reflected their heritages. All of this seemed so fundamental, yet had little to do with what I usually talked to my patients about.
These conversations helped me realize that we’d been looking at the wrong places for the answers. What if the game changer in the fight against chronic disease was patients themselves, working with one another to create healthier communities?
In the 1980s, an engineer and physicist named Ed Noffsinger found himself diagnosed with interstitial lung disease, a chronic condition that makes it difficult to breathe. He soon found himself in waiting rooms for hours (more precisely, an average of 90 minutes) for a 15-minute appointment that always felt incomplete. At the same time, he began to realize that he often learned as much from other patients in the waiting room as in the exam room.
Noffsinger soon pioneered the “shared medical appointment,” in which 10–12 patients share a witnessed medical encounter for 90 minutes. Each person’s health issues are addressed in turn, and both patients and providers help each person come up with solutions. Importantly, everyone learns from each other — and as a bonus, waiting is almost entirely eliminated.
My team adapted the shared medical appointment model to create the diabetes group Mariana joined. In the first year that we ran these visits, we learned that attending two sessions had the same impact on people’s health as being on a popular medication. People grew confident in managing their health and served as peer champions.
Two of my colleagues, Dr. David Roll and Fran Puopolo, adapted the model to addictions treatment in primary care. They combined the peer group and support patients typically get from groups like AA with medical screening and treatment for addictions — a powerful prescription for recovery. Because these groups took place in a primary care center, patients avoided the stigma of an addiction clinic. The results were dramatic: 60% of people not only stayed clean and sober but got jobs, went back to school, resolved housing and legal issues, and reconnected with loved ones.
Patients Like Me is taking this to a whole different level. Patients Like Me is a website created to help patients find others who share the same chronic disease. People share insights, symptoms, and clinical data, and can even conduct their own research projects to compare progress. They share the kind of useful information in which, frankly, patients and families have greater expertise than clinicians — much like the members of our diabetes group.
What if we could harness the energies of people to take charge of their own health? What if the job of professionals were to serve as a trusted guide and adviser — not the sage on the stage, but the guide on the side? What if we helped create the policies and community structures that made it easier for people to engage in better health, like walkable streets, safe neighborhoods, and healthy workplaces?
Hand in hand with patients, I believe we can begin to create the health system we need for the 21st century. It starts by creating a new social contract, one that recognizes the critical answers that only people like Mariana have to unlocking their own health.
