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.
David Harlow
The Harlow Group LLC
Health Care Law and Consulting