ePatients: The Disruptive Innovation for Shared Decision Making?

As readers may recall, the Disease Management Care Blog is a big fan of shared decision making (SDM). Using unbiased, state-of-the-art and interactive media that presents a set of treatment options, patients with the help of their doctors are surprisingly able to input their values, make trade-offs and come up with the best choice. Research suggests that patients tend, in aggregate, to be both reasonable and conservative.

The DMCB is also a fan of the ePatient movement.  Based social media, this is the networked and two-way sharing of medical information in a virtual community of like-minded patients that also facilitates informed patient decision-making. Compared to SDM, ePatients have been less well studied, but there is some good research that suggests that these on-line communities are remarkably disciplined and accurate. In fact, advocates argue that ePatient communities, compared to physicians, are better able to alert its members about the latest medical updates.

Which makes the DMCB wonder if the ePatient movement represents a classic disruptive innovation that is threatening the SDM business model.  Commercial SDM typically is made up of video content (much like a DVD) that is developed by credentialed experts and has to be updated periodically. Contrast that approach with the ePatient community (on-line, on demand whenever you want it) that harnesses the wisdom of crowds and is so organic, it really never stops being updated.

Think music CDs vs. iTunes. Or DVD movies vs. on-line streaming.

But the most important distinction? The former is being sold by physicians or content developers, while the latter is being given away.

The DMCB speculates:

The shortage of primary care services, increased cost sharing, spreading consumerism, the explosion of medical information, distrust of authority, ease of use for social media, less concern about privacy, the rise of self-educated experts and a curious immunity from actually having to make money all make the DMCB think that the ePatient movement is here to stay.  It's value will trump the inevitable anecdotes of waylaid web users, e-mistakes and death by internet.

In order to stay relevant, commercial shared decision support tools will begin to direct users to medical e-communities. Physicians will "outsource" their own SDM to online ePatients. This will give IBM's Watson a run for its money. Architects of clinical guidelines, point of care decision support, EHR portals and health information exchanges will successfully ignore the ePatient movement - for now.

On-line bulletin boards will be the first stop for any new symptom and to second guess physician advice. The doctor-patient relationship will turn into a menage a trois.

"eApps" will appear for the persons with diabetes, mothers of leukemics and the children of persons with Alzheimer's.

Health insurer preferred provider networks will have one more reason to die off.

e-Communities will add value in helping its ePatients figure out how to get insurers to cover services that would otherwise be denied.

Some mainstream health organizations will host ePatient communities.  Authentic and trustworthy ones will learn from them. None will successfully commercialize them.

Researchers will tap into e-communities to recruit patients for research. The pooling of users' data for observational research studies will grow.

Unfortunately, this will exacerbate the medical digital divide for persons without reliable access to the internet.