This article, in the Stanford Social Innovation Review, looks at how platforms that provide a way for patients, caregivers, and health care staff to share stories and develop solutions across the health system are disrupting traditional hierarchies in medicine.
The article identified four main reasons why online health communities are valuable:
- They provide patients and caregivers with new resources. This can include information, solidarity, and support. One community member wrote in a forum, “When I finally found a Facebook group for people who had been discharged post-transplant, I cried every time I logged in for three weeks. “Here at last were people who understood exactly what I was going through.”
- They offer new insights to non-patients. Individual clinicians can learn how patients experience their disease and care: “I had no idea that ‘brain fog’ was one of the commonest symptoms for people with multiple sclerosis until I saw how patients were ranking their symptoms on PatientsLikeMe,” a family physician told us. Researchers can learn about the processes and outcomes of care. “It turns out that better ways to deal with pain was a key priority for people with arthritis,” one researcher told us. “This triggered a real change in our research funding priorities.”
- They challenge traditional power dynamics between patients and clinicians. As one patient wrote, “We don’t want to be ‘consulted.’ We want to park our tanks on the hospital’s lawn.”
- They form part of a growing trend in data collection that pushes the boundaries of traditional health care. Other related efforts include the quantified self movement, which tries to incorporate data acquisition into aspects of a person’s daily life, Apple’s ResearchKit and CareKit, which help medical researchers and individuals gather data, and the growing ubiquity of biometrics, the collection of data like fingerprints and facial-recognition scans used to provide access or verification. Movements like #WeAreNotWaiting, for people with diabetes, support patient-created hacks and innovations.