Patients Deserve Complete Access To Their Health Data

As a vigorous healthcare advocate — for both myself and ailing family members and friends — I love the idea of OpenNotes. As some readers will know, the OpenNotes model gives patients easy access to their clinician’s visit notes within the system’s EMR.

As you can see below, the idea has gone from a three-practice demo to a hot idea:

Chart courtesy of OpenNotes,org

Still, given the widespread adoption of EMRs by hospitals, you’d think the list of participating healthcare organizations would be longer.  The group represents a very small percentage of U.S. hospitals and clinics.

I’ve read many critical analyses of the OpenNotes concept, and some have a reasonable foundation. But if you dig into the analyses, it becomes pretty clear what’s going on; critics believe that doctors and patients are insecure and immature.

After all, while there might be some exceptions to the rule — such as providing too much access to mentally ill patients during an acute episode —  in general I believe that patients should have complete access to information concerning their health status and treatment.

After all, whenever possible medical treatment should be based on consensus, especially when clinician and patient don’t know each other well. No EMR on the planet can teach the doctor about my history as quickly and accurately as I can. OK, I admit it, I didn’t go to medical school, but as a 50-year old patient activist with multiple chronic illnesses spanning 30 years, I would tend to believe that I understand me better than an ED doc that met me five minutes ago.

Not only that, I’d argue that if the information a clinician creates concerns my health, well-being and safety, it’s flat unethical to keep me from seeing it. I want to know what’s going on and I want to know now. But many institutional practices make even routine data sharing difficult. I’ve even had medical practices refuse to share clinical testing results via their portal until the clinician had “approved” it. Yeah — try saying that to my face, lady.

Bottom line, both sides should be capable of addressing documented reality and debating matters of opinion like adults. Assuming otherwise might protect clinician and patients from bruised feelings, but it doesn’t improve their care. Instead, it keeps an obstacle to collaborative medicine in place which shouldn’t be there.

About the author

Anne Zieger

Anne Zieger

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.