Monday, September 21, 2009

Transparency With Patient Data

I was disturbed to see some of the comments in the recent story on NPR "Doctors Don't Agree on Letting Patients See Notes." The idea that patients should not ordinarily be allowed to see their own chart notes is anathema to me. When Dr Thane says "We may not as accurately describe the mood of the patient, the tenor of the encounter, for fear that we may get someone perhaps already a little angry during the encounter — more so after they log on and read the note that I just finished," betrays a possible unprofessional documentation in the note. Certainly any provider had better be prepared for the chart to be read by the patient, unless there is compelling legal reason not to allow it (such as mental incapacity etc.)

We have for many years allowed patients to not only read their chart, but make their own notes as well. This is core to the Planetree patient-centered philosophy of care.

"The Planetree philosophy stresses that one of the most valuable learning resources available was the patient’s own medical chart. Patients were encouraged to read their charts daily, ask questions and discuss findings, and participate in the decisions affecting their care. Patients were also encouraged to keep written records of their experiences and observations in Patient Progress Notes, which became a permanent part of their medical chart if they so desired."
by Susan Frampton, Ph.D. and Patrick Charmel

I am glad to know that this idea is finally gaining traction and hope that those who are afraid of this philosophy will rethink their position. I can assure Dr. Tom Delbanco, of Harvard Medical School, that once you open some daylight into patient's charts there is no going back.

Remember when Elaine needed to see her chart on Seinfeld:


  1. You took a great a initiative some time ago! I hope it keeps going viral...

  2. Brian,

    We are launching a new platform, ZibdyHealth, to help patients to address personal data issue. There are plenty of regulations written since you wrote this article. AHA and MU have pushed providers to share patient data but it is far from reality. In San Diego, there are 9 large hospital systems and they were given grants via Beacon Community project to create an exchange; 18 months and $16M later, less than half of these organizations will be part of this limited exchange for the providers. The patient is still completely left out of this exchange.

    Discharge instructions are still a big issue. Patient is asked to come back in 2 weeks for an appointment but those two weeks are black hole.

    I can go on and on but you probably know more on this subject than us. No amounts of regulations are going to help. This is similar to asking Google to share user search history with Bing so that users truly benefits and we know that will never happen. Data is competitive advantage. If I had my data I would probably go to some neighborhood doctor for cold and flu rather than a big hospital. Insurance will work with me if I find cheaper solution.

    So why don't we empower patient. There is lots of talk about it but we take same old approach depends on healthcare provider to give us patient records. This running around in circles will not solve this problem.

    The platform we are developing breaks this absolute control of healthcare provider with very little work by patients. Our platform, ZibdyHealth will work with providers but we do not need them to create patient medical history. It may not be perfect solution in the beginning but even partial success can turn into a big step forward and we will keep improving and innovating. We are offering our solution completely free and plan to keep it that way.

    ZibdyHealth team

  3. Thanks, Brian, for reminding all of us about the point - about patients' charts and doctors's words.