Mind the Gap

It’s a simple idea – show patients the notes that doctors write about them– but it’s also a dangerous idea … in the best sense of the word. It’s dangerous because the very idea forces a conversation and in the course of that conversation, some uncomfortable tensions surface. Jan Walker and Tom Delbanco, co-directors of OpenNotes, a project supported by the Robert Wood Johnson Foundation’s Pioneer Portfolio that enables patients to see their doctors’ notes via secure e-mail after a visit, published a preliminary set of results from their first study. Actually, it’s just a pre-study: they surveyed doctors and patients about their expectations of how the OpenNotes idea would play out. And what they found is fascinating – and uncomfortable.

Doctors and patients are clearly divided about the expected benefits and consequences of the OpenNotes intervention. On a wide range of possible benefits, ranging from a greater sense of control to increased medication adherence, doctors are more skeptical than patients. But what really jumps out are the responses to questions of whether patients would find the notes more confusing than useful, and whether the notes would make them worry more. The gap is dramatic. In each case, most doctors said “yes” while less than one in six patients agreed. Ouch. That’s a big gap and my sense is that we should be talking about what it means. From my perspective, it appears that many doctors are underestimating their patients and that this underestimation could lead to less patient engagement and ultimately poorer care. Call it a hunch.

To be fair, doctors are a varied lot and the paper shows clearly that doctors who chose not to participate in the study are far more skeptical than those who did participate. But even those who did were still way off from their patients on questions of confusion and worry.

As I mentioned, these are only the expectations and the year ahead should bring plenty more to discuss. The results from the one-year demonstration of OpenNotes should be available for publication in the spring.

What do you think of these initial results? What do you make of the gap? And how do we start to close it?

Stephen J. Downs is the Senior Technology and Information Officer, Robert Wood Johnson Foundation.