Do patients in the U.S. really own their healthcare data?

Yesterday I was reading through my Twitter stream when I came across a brief exchange between Eric Topol (@EricTopol)  and Farzad Mostashari (@Farzad_MD). Both are big names in the digital healthcare space.

Topol and Mostashari make valid points, in as much as you can in 140 characters. Technically you have full access to all your healthcare information, whether it’s from physicians, hospitals, pharmacies, etc. The problem is that it isn’t always easy to get. I’ve been blessed with good health during my 45 years on this planet. Other than an occasional checkup and a bump in the road here and there, I haven’t generated a whole lot of healthcare data. Unfortunately when I’ve tried to obtain what little data there is, things haven’t always gone smoothly. I’ve had physicians’ offices push back in a passive-aggressive way by making me jump through several hoops and then making me wait 6-8 weeks for my records.

Things were much worse with my mom. The years leading up to and after her liver transplant generated tons of healthcare data; progress notes, clinic visit notes, surgery summaries, an unimaginable number of labs, imaging studies, biopsy results, medication refill reports, and so on. My mother’s records were scattered among her primary care physician, several specialists and at least two separate hospitals here in the Central Valley plus UCSF Medical Center.

Most of the entities providing care for my mother were fairly cooperative – and my mother was proactive in obtaining records of her labs and follow-up appointments – but there were a few that made life difficult for all of us that were actively involved in her care. One hospital in particular created such a barrier that we finally stopped asking. UCSF stopped asking as well. It became such a headache that when UCSF heard where her most recent results were held they simply rolled their eyes and repeated the test. Hard to believe, but true. That about sums up the status of who owns your healthcare data.

In my opinion ownership implies that you not only have access to the item you own, but that you can do what you want with it whenever you want. Based on that criteria I don’t think most Americans can confidently state that they own their healthcare data.