1) To understand the differences and similarities of these various health information environments, one needs to look at who is the sponsoring org, what is their motivation(s), etc. RHIOs are typically quasi-public non-profits, relying on grants for funding to create health information (clinicals) sharing networks within a region – focus is sharing of that information among professionals (i.e., the physician/provider community) and very little to do with the consumer. HIEs are very similar (share info among docs) but are supported by a large entity, typically an anchor IDN/lg hospital. As I stated in the post, HIEs are created because there is a financial incentive/motivation. Then we have the communities (MedHelp, Braintalk, ACOR, etc.) which target consumers, there is little if any direct clinical data (clinical notes, images and lab results) shared within these communities with virtually all data being unstructured text – it is more experience sharing that clinical data sharing.

2) So yes, these consumer focused communities are about exchanges of information on specific conditions, but this information is experiential and by and large not real clinical data. As communities are unstructured data, they are difficult to use for clinical applications. But there are exceptions such as PatientsLikeMe where they do have some structured data inputs.

3) I have sat in on discussions/webcasts sponsored by HHS and other govt. entities where social networks and communities are discussed. There is general agreement that these sites do provide value and can be extremely useful for those trying to manage a chronic disease. But these communities are not all that useful to a clinician who relies on data from labs, images and the like and direct communication with the consumer/patient.

That being said, it would make a fascinating study to look closely at these communities to determine what contribution(s) they have made to improving outcomes. To date, I have only seen a lot of hand waving and thin circumstantial evidence that would not stand up to closer scrutiny. If there is a good study out there I would love to see it. Please send it my way or provide a link.

HIEs can be profitable. They are the only vehicle to attack chronic illness.