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.