There is no magic bullet or quick fix that will allow Americans to participate more fully in their health and wellness or have unimpeded access to their medical data. Instead we -- yes, I like to include myself -- chip away at expanding consumer empowerment. Hundreds, maybe thousands are joining in: bloggers, patient advocates and more than a few of my public health heroes. Advocating for universal access here, helping a pre-op patient label her limbs there...and reading, studying and presenting information about health that is useful, accurate and accessible.
But is it helping?
While it has the feeling of a social movement that is valid in its own right, I have assumed that patient empowerment is also an important contributor to better health. It never occurred to me there was little evidence to that effect! But in the premier issue of the Journal of Participatory Medicine Joseph Kvedar and David C Kibbe -- highly respected experts in the field -- wrote
The emerging phenomenon of participatory medicine seems to lead to improved health outcomes, but this is not yet supported by a robust evidence base. Fundamental questions about the participation of individuals -- sick and well -- remain unanswered. Only through the convergence of many diverse and novel modes of research can the richness and complexity of participatory medicine be made workable...While the idea of listening to patients is not new, transferring all or some responsibility for their health to them is a concept that requires some examination...
They also ask "Where can technology be strategically deployed?"(emphasis mine) It's important to be discerning in adopting communications technology. Many technological tactics and tools are being legitimately developed and used: EMRs, PHRs, online patient education efforts and texted public awareness campaigns. None of them stands alone; the problems they address are notoriously complex. In fact Dr Atul Gawande argues in the December 14 New Yorker that our broken healthcare system's problems will never be "solved," they will only be "managed." Whether healthcare problems are "solved" or "managed" may seem like semantics but either way, Gawande wrote, "nobody has found a master switch that you can flip to make the problem go away...(we must)recognize that there is no technical solution."
epatients like you
Still, technology is pervasive. Everybody loves epatient Dave. Not only did he "stomp the snot out of a nasty cancer," he's a good writer and, basically, the poster child for empowered patient bloggers. Blogging is the best-established part of the empowered-patient-social-media mix. In an excellent article this week, Susannah Fox of the Pew Internet and the American Life Project wrote about social media in medicine:
Social media is simply the current expression of patient activation and engagement. But this time e-patients are part of a larger cultural change that assumes access to information, enables communication among disparate groups, and expects progress...If you don't have patients and caregivers on your team, you’re doing it wrong.
So, oh yeah, what was so disappointing about Matthew Holt's suggested site? It's well-meaning but provides no real new information. It did include one useful tool: a "wallet card" sized PHR in PDF form. Eschewing paper, I plan to adapt it for my cell phone ICE (In Case of Emergency) file. For a range of PHR options try My PHR, the American Health Information Management Association's searchable site.
Empowering patients sure feels like the right thing. Let's be sure we also do the thing right. Technology is and will continue to be a crucial element in patient empowerment, as long as it goes beyond "do no harm" and actually HELPS patients.