Opening Physicians' Notes to Patients

Jun 19, 2009, 4:19 AM, Posted by Steve Downs

Today’s Boston Globe ran a story (page one, no less!) announcing our grant to Beth Israel Deaconess Medical Center run a three-site demonstration of opening up physicians’ notes to patients.  That’s not just making labs, drugs, allergies, etc. available to patients–it’s giving them access to the actual notes that the physician records about a visit.  Now these notes are technically available now–under HIPAA each of us has a right to our full medical records (of which physician notes are a part), but the processing for obtaining them is often slow, cumbersome and even expensive in some cases.  Under this project, called Open Notes, patients will receive a secure email after the note has been completed and they can see it right away.  They’ll also be prompted to review the note prior to their next visit.  So instead of limiting access to the very determined, access will be easy for anyone who’s mildly interested.

Why would we fund this? Several reasons, really. First, is that at the Pioneer Portfolio, we’re very interested in patient-centered innovation.  Let’s face it:  virtually every trend suggests that people are going to have to become much more engaged in their care and in taking care of themselves.  And, as the pioneers of shared decision-making, patient centeredness, patient activation, online support groups and the health 2.0 community have shown us, real benefits come from this engagement.  So much of the energy and excitement in health care today is coming from the patient/consumer side of the equation. So it’s a space where we believe we will find many innovations that can ultimately transform health.

Second, it’s an elegant system tweak that could really affect behavior.  It’s just a hypothesis at this point, but think about how the knowledge that a patient will read a note will affect how the physician writes the note.  Of course the effect will vary by individual, but this little tweak–with a very small marginal cost–takes a task that physicians do dozens of times a day and reframes it.  As my colleague Paul Tarini has pointed out, it says that this note is for the patient more so than about the patient.  Subtle but important.  My own bet is that this change could do more for influencing how physicians see their relationship with their patients than years of training on how to be more patient centered.  Of course I could be wrong!

And that brings me to the third reason.  This is a controversial idea that needs to be tested.  As we–and Tom Delbanco, the principal investigator on the grant–talked to people, we found strong opinions on both sides of the issue.  There are many people with a patient advocacy perspective who think this is so obvious, such a right and there should be no question about it.  And there are many physicians who think–for very plausible reasons–that this is a terrible idea.  As I said in the Globe article, there’s a bit of a religious character to the debate–you either believe one thing or the other and you believe it strongly.  But there’s been precious little evidence to inform that debate.  That’s why it’s important to do the study and do it on a large scale.

So we’re all excited about this project.  It’s a simple but powerful idea that deserves a real test.  And we hope it sparks enough discussion to raise some interesting and fundamental questions.

This commentary originally appeared on the RWJF Pioneering Ideas blog.