It's time to move beyond the isolated patient experience, but the social outlets we're using aren't made for sharing high-stakes information.
"Has anyone else gone through this before?" That's one of the first things a person asks himself after being anointed a "patient." In illness, as in any other life events, we are social creatures looking for shared experiences and in need of support. But the reality is that our health care system is not designed to serve this purpose. Instead, our system evolved to promote isolation. And, in many ways, this isolation is very much at the heart of the patient experience.
There are two solutions to the isolation experience. The first is to build layers upon the patient-clinician relationship -- to build stronger ties, more connections, and a culture of shared decision-making between patient and physician. There are many advocating for this idea, but it requires cultural shifts across a medical profession that typically evolves at a snail's pace and would require systemic changes in both policy and reimbursement. The second is to build communities of patients with shared experiences, shared fears, and shared data -- and it is this second solution that deserves much more public discourse, lest we get ourselves in an unexpected and unfortunate jam.
While online health solutions and peer-to-peer communities have rapidly evolved, the protections of this participation and its accompanying data have not kept pace.
CAVEAT AUCTOR -- AUTHOR BEWARE
Few would argue that our popular culture is increasingly accepting of open sharing -- I know more about my elementary and high school classmates now than I did when we were seated in the same rooms. We are embracing social technologies at breathtaking rates, and by some reports, these technologies are quickly becoming our mainstream communication channels. But the most omnipresent social channels were not engineered for sharing the types of high-stakes information that defines the vulnerability of being a patient. The novelty of sharing personal health information online, even within "private" communities, has not received specific legal attention. As a result, our only certainty is that health care-related information that is shared across these channels, be it Facebook or Twitter or online disease support groups, is neither safe nor protected.
So we each must think through how and what we choose to share, and make our own value judgments. To do this, it is important that we understand how our online health-related behaviors may be tracked, and what conclusions may be drawn. It is important that we ask the question, "What could be learned from analyzing my online activity?"