Within a few days after it was posted back in December, I saw at least half a dozen links to the op-ed coauthored by Newt Gingrich and neurosurgeon Kamal Thapar about how the doctor used information on Facebook to save a woman's life. (It was published by AOL News.) In brief, a woman who had been to see a number of different health care providers without getting a clear diagnosis showed up in an emergency room, went into a coma and nearly died. She was saved by a doctor's review of the detailed notes she kept about her symptoms, etc., which she posted on Facebook. The story is vague on the details, but apparently her son facilitated getting the doc access to her Facebook page, and the details posted there allowed him to diagnose and treat her condition. She recovered fully.
Newt and Dr. Thapar wax rhapsodic about how Facebook saved a life, and sing the praises of social media's role in modern medicine. (I'm not sure how this really fits in with Newt's stance on health reform, within his 12-step program to achieve the total replacement of the Left ... but, hey, nobody has the patience these days for so many details anyway.)
To me, this story does not represent a shining example of the Facebook cure, a "House"-like bit of detective work neatly yielding the result we all knew could be pulled out of the proverbial hat. Instead, it represents yet another indictment of the colossal system failure that we call the U.S. health care system. There is a lot that we do right, but here the system got it wrong. In a more perfect world, where incentives are in place to encourage clinicians to spend more time with patients during office visits, perhaps this patient's ailments could have been diagnosed earlier, and the emergency hospitalization and coma -- with their attendant shocks to the pocketbook and body -- avoided. An appropriate system of incentives that leaps to mind here is the PCMH, or patient-centered medical home. A close runner-up, perhaps better described as a delivery-system model rather than an incentive-system model, is the ACO (Accountable Care Organization). In a PCMH, a primary care team is incentivized (through patient management fees and other means) to take the time to dig deeper and manage a patient's care in the best and broadest sense of the word. In an ACO (though the rulebook has yet to be written, the outlines are present in the ACA and in NCQA and industry association guidelines now under development), the system is supposed to direct the patient to the setting where comprehensive care may be provided most efficiently.
While things certainly worked out well for the patient in this story, it is an anecdote without broader policy ramifications. Is Newt calling for us all to include medical diaries on Facebook to improve our chances when we lapse into comas in emergency rooms? To cite having a repository of data created by a patient on Facebook, perhaps in part out of frustration at not being able to communicate the big picture to anyone within the health care system, as an example of a health care social media success, seems to me to miss the point entirely.
Patients should be encouraged to monitor themselves and their symptoms, and to track them over time as an aid to their clinical teams, but we should all be able to enter information -- either automatically, through connected health devices or mobile health tools, or manually -- through patient portals that link to our electronic health records and generate alerts, when warranted, for our clinicians. The investment in health IT being made by the payor and provider communities -- and the federales -- is predicated on the notion that having more complete information gathered together in a manner that is easily retrievable and analyzable will yield better results, both economic and clinical. While some may argue that the conclusion has not been proven in the HIT world, it is a compelling framework for progress that has had application in realms of human endeavor beyond health care as well.
Moreover, the patient needs to be a full peer on the health information network, and effective use of social media is a key tool to use in making that happen. Siloed uses of social media tools will not help patients or providers.
I'm glad Newt "likes" Facebook, but I'd like to see us work to realize the potential of a more effective deployment of resources to improve care coordination, patient engagement, cost containment and, of course, health outcomes.
David Harlow is a health care lawyer and consultant, and a member of the Mayo Clinic Center for Social Media's External Advisory Board. A version of this post first appeared on his blog, HealthBlawg.