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.
But the world of online health extends well beyond forums, blogs, and information. 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.
Paul Hodgkin, Louis Horsley, and Ben Metz 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. Their aim was to better understand the emerging field of online health communities, and determine whether and how to accelerate successful projects.
The resulting article in the Stanford Social Innovation Review gives an exhaustive overview, including:
- the four main reasons why such online health communities are valuable
- a set of significant patient-led innovations, shaped and enabled by shifts in digital technology
- the core challenges facing online health communities
- how patients, platform owners, and technologists are responding to overcome these challenges
- the business models that maximize the chances of finding solutions that work