A Perspectives piece I wrote was published this week by iHealthBeat – Unlocking the Power of Health Data. In it I argue for patient-controlled sharing of rich data, as opposed to HIPAA-regulated stripping of identifiers in order to eliminate the risk to patient privacy as data is shared for research and other purposes. Googler Larry Page and Josh Stevens of Keas have argued recently in favor of broader uses of health data, but the issue of HIPAA keeps coming up in those conversations. Most connected patients seem comfortable with the idea of sharing health data, and as more of us get connected, this sentiment is only likely to spread.
As I wrote at iHealthBeat:
I have discussed the patient donation of data before, and the first objection I heard was from a data scientist who worried that the volume of patient records collected in this manner would be too small to yield any meaningful insights. While this may be true at first, I believe that over time patients will come to prefer to set their own limits on data sharing rather than be stuck with the one-size-fits-none approach available under HIPAA. In addition, the data made available through these repositories will be more valuable than that available as de-identified data for research precisely because there are more identifiers attached.
Are we ready for a new paradigm in data sharing and big data analysis? How do you balance the risks of sharing your own health data against the benefits of having the shared information helping others?
David Harlow is a health care lawyer and consultant at The Harlow Group LLC, and chairs the Society for Participatory Medicine’s public policy committee. Check out his home blog, HealthBlawg, where a version of this post first appeared. You should follow him on Twitter: @healthblawg.
Cynic or realist or just a sociologist: I’m willing to openly share all my data because what has traditionally been viewed as “privacy,” no longer exists anyway.
I’m past ready, actually. In fact, I’m planning on getting a tattoo in the next month or so, a QR code that will link to my full medical records and my advance directive, both extant on one of my own websites. I’m tired of waiting for the healthcare industry to make my records easily accessible to all who might wind up on my care team. So … I’m building my own HIE.