We are witnessing the emergence of a new phenomenon in health care: self-organizing, online communities of patients, caregivers, clinicians, researchers, academics, and industry, all focused on a particular disease.
Patient-led sites that offer support and information are the most well-known. They typically offer a moderated forum, blogs, advice, support, academic references, and a place to shop for relevant products. IBDrelief, a well-managed platform focused on inflammatory bowel disease, is just one example.
But the world of online health extends well beyond forums, blogs, and information. Platforms like Care Opinion (previously Patient Opinion) provide a way for patients, caregivers, and health care staff to share stories of care and develop solutions for problems across the system. Research-driven communities such as Patients Like Me pool patient feedback about the efficacy of therapies, side effects, and disease progression to the benefit of patients and clinicians, industry players, and academics. And campaigning projects, such as the Genetic Alliance, aim to influence policy and funding decisions for their conditions.
Why online health communities matter
With funding from the UK foundations Health Foundation and the Guy’s and St. Thomas’ Charity, we conducted 72 interviews in 2015 and 2016 with mainly patient-led, UK-based patient groups, online health bloggers, clinicians, health service managers, entrepreneurs, venture capitalists, academics, and policymakers. Our aim was to better understand the emerging field of online health communities, and determine whether and how to accelerate successful projects.
To start, we identified four main reasons why online health communities like the ones we mentioned above 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.