Peer-based health networks are poised to become a powerful member of the health care ecosystem with an expanding role, possibly having influence in policy, ethics, regulation, research and finance. It will be interesting to see how health social network identity develops and is expressed since a health social network is simultaneously an aggregation of individuals and an institution with its own leadership, goals and agenda.
In other sectors, social networks have sought to maintain neutrality by “only providing the platform,” for example peer-to-peer finance sites like Prosper. It is too early to forecast what will happen with health social networks, but PatientsLikeMe as the flagship example has an on-site research staff and appears to be quite involved in administering and orchestrating the patient community, with a collaborative stance towards traditional medicine.
Internet-expert Clay Shirky notes the progressive stages of social network activity which seem to be unfolding in lockstep in health social networks: initially sharing, then collaborating, and finally organizing for collective action. In addition to external collective action, the internal peer support of health social networks could evolve into positive-impact peer pressure, for example, health social network users competing to lower key biomarker scores like cholesterol and blood pressure, using third-party test uploads from LabCorp to measure and validate the results.
Health social networks could develop into large-scale online aggregated communities with market power, providing visibility into demanded research and remedies and directing and funding research priorities.
Health social networks can facilitate long-tail medicine, allowing small groups of cure-seekers and interested researchers to meet.One future example could be the CureTogether migraine community raising $50,000 in crowd-sourced funding, reviewing and approving grant applications, open-sourcing the research findings on the website, developing remedies and testing them in patient-run clinical trails; this is a new twist on the OpenBasicResearch.org idea. Health social networks could become a key quantitative indicator and independent barometer of demand for medical research, a useful input to the research agenda-setting of the NSF, pharmaceutical companies and academia.
Note: The author is an advisor to CureTogether. The concept of long-tail medicine is described in more depth on p. 26 of Emerging Patient-Driven Healthcare Models.