I recently spoke with Theresa Defino, editor of AIS Health's Report on Patient Privacy about the limits of social media "research" by or on behalf of health care providers. The impetus for this piece was a post written by Art Caplan about a patient being taken off the liver transplant list when social media posts including photos of the patient drinking alcohol came to the attention of the transplant team. (The patient was later put back on the list.)
Is this sort of "Big Brother" approach OK, or was it taken too far? (Follow the link to a discussion of the British case I mention in the article.)
Medical ethicist Art Caplan, my brother at the (HIPAA) bar Adam Greene and I were quoted in the AIS Health article. Greene noted that HIPAA does not cover the posting of information by or about a patient on a social network and its review by a provider. Caplan and I agreed that what's public is public, and what's private is private.
(Newt Gingrich, a couple years back, seemed to be calling for the use of hacked Facebook accounts as a reasonable substitute for electronic health records. One woman's approach to quantified self — tracking symptoms on Facebook — turned out to be a lifesaver when her son hacked her account and shared the posts with her physician after she was admitted to a hosptial through the emergency department and ended up in a coma. While this may be a heart-warming anecdote, it should not support any policy decisions. I would not want to encourage hacking social media accounts as a general rule, and I would want to encourage more robust communication between patient and physician — a goal that we should reach in Meaningful Use Stage 3, when standards will be introduced for patient-generated health data … patients writing to the EHR.)
Clearly, the notion that certain "boundary issues" are sacrosanct is not as widely disseminated within the medical-industrial complex as it should be.
The Federation of State Medical Boards' model social media policy, recently adopted by the Rhode Island medical board (and therefore discussed in the AIS Health piece), lays out an early-stage framework for the use of social media by health care providers. (See my earlier post on the FSMB and ACP social media policy. Also worth noting is an earlier social media misstep by a Rhode Island physician.) As with any tool that is new to a particular group of individuals, it is important to start with a conservative approach, and slowly build out from there. Some health care social media users are comfortable with the tools, and are using them well. Over time, more users of social media in the health care arena will be functioning — collectively — at a higher maturity level. Guidelines that are implemented and then revisited on a regular basis can mirror the current maturity of any given community, and can help move the community along to the next level.
Standards, ediucation and familiarity are all essential elements for the development of robust and respectful interactions in the realm of health care social media. As important as knowing how, when and where to post something is knowing when and where to look for information, when and where not to look, and when to take it off line.