Patient Engagement Needs to be a Two-Way Street

The “patient and family engagement” objectives within the federal Meaningful Use (MU) incentive program Stages 1 and (proposed) Stage 2 have been well-intended steps forward. But they have mostly regarded patients as receivers of information (education materials, clinical summaries after each visit, view/download/transmit their information, receive patient reminders). This is pretty much a “one way street.”  Sure, there is “secure messaging” where a patient can send essentially an email to a provider. But most requirements assume that providers control the keys to information that they (figuratively) “dispense” to the patient.

I recently read a fascinating book called “Cognitive Surplus: Creativity and Generosity in a Connected Age” by Clay Shirky, whose premise is that the digital age offers “thrilling changes” as society is transformed from a passive consumer culture (e.g., watching TV/movies and reading publications, all controlled by large media companies), to a more networked culture where technology enables people to create, publish, share, connect, and collaborate in innovative ways, without dependence on established authorities. While the “free for all” can produce huge volumes of frivolous or low-quality content, it can also engender truly original and breakthrough ideas, which otherwise would not have happened, by relying on the goodwill and “cognitive surplus” (hitherto untapped creative energies) of millions of people. Examples include Wikipedia, kiva (microfinancing to help individuals start small businesses and alleviate poverty) and Grobanites for Charity fans of a singer who banded together to help charitable causes in places such as Africa. Shirky’s cognitive surplus thesis has strong parallels to the Health 2.0 movement and patient engagement. How can patients be full partners and contributors to their health information and their health, rather than merely passive consumers whose information is controlled by providers? Or, to use a music analogy as I like to do, is the patient just listening to solo performances by each provider, or are they playing harmoniously as an ensemble?

Patients are partial contributors already. After all, didn’t lots of the patient’s history and information about symptoms, contraindications, outcomes, and treatment that’s in paper charts or EHRs come from patients and their families, through interviews, assessments, and clipboards? Who knows better than patients what they are really doing (not what someone else thinks they ought to be doing)? So it’s good that there has been recent testimony and requests for public comment from the HIT Policy and Standards Committees about patient-generated health data (PGHD). If you have any interest in this subject (and, as a patient, you should), you can respond too. There’s no stated deadline, though commenting sooner rather than later you’d be more likely to be heard.

Admittedly, it’s easier when discussing EHR certification and MU to discuss outputs from the provider’s EHR to patients, because those are easier to understand, quantify, and control (from a provider’s or EHR vendor’s perspective). When accepting information from patients, things are much more unpredictable. The request for comment asks 10 good questions, such as how “structured” PGHD should be, where are patients “the authoritative source,” and what degree of incorporating PGHD into EHRs should be expected of providers.

I have many thoughts on these questions. More to come next week…