THCB

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.

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marshpErin GilmerSteve DownsLisaDr. Mike Recent comment authors
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marshp
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Steve Downs
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Erin,

Thanks so much for such a thoughtful articulation of why it matters to see the doctor’s notes about oneself. I’m really looking forward to the study’s results so we can learn what patients in the three (very different) trial sites actually did with this ability.

Erin Gilmer
Guest

Medical records are not a science as Dr. Mike says above. They are clinical and may not quite be an accurate discription of the visit (they report truthful information but they leave out the human part of the interaction). Even then I believe that medical records should be easily available for patients to read. I believe obtaining copies of your medical records is of the utmost importance in managing your own health. When we see doctors, we aren’t taking notes, we may be emotional, we may not understand what they are saying. So how can we be relied on to… Read more »

Steve Downs
Guest

Thanks for all the comments – and it’s great to see the debate about the impact that OpenNotes could have. The good thing is that it won’t be long before the research team can share the full results of the study, which should illuminate a lot of the questions that inevitably get raised. They’ll be able to say a lot about questions of whether doctors are modifying their approach to writing the notes, whether their time is being consumed dealing with questions or disputes about the content of the record, and whether patients are finding errors. Margalit’s question about whether… Read more »

southern doc
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southern doc

Addendum: as we move to EMRs, with the expectation that the note be completed during the office visit in order to maintain productivity, inaccuracies and discrepancies will become more common, and will be spread throughout your entire record, becoming more difficult to correct and remove.

southern doc
Guest
southern doc

Thanks for the clarification. I understand your concerns now.

Lisa
Guest
Lisa

I understand that I have not given you enough information to fully understand the situation, so your conclusions are based on a subset of the history/decision making, etc., that occurred. I’m sorry I won’t explain this in gory detail to give you the big picture – that wasn’t the point. This went on a tangent about what you thought I meant by “event” – I’ll just refer back to my original comment regarding discrepancies in the record contents and what I was told or not told. Perhaps originally I should have just mentioned the first two examples – incorrect information… Read more »

southern doc
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southern doc

The doc’s note is a analytical synthesis of the most important aspects of the history, exam, and decision making process during and after the office visit.

If you expect a documentary record of everything that occurs during that visit, it is up to you to create your own record, or to audiotape or videotape the visit.

Sorry, but your expectations of what should be in the medical record are unrealistic.

Regards.

Lisa
Guest
Lisa

Southern doc … I think I was pretty clear about my thoughts regarding notes made during visits. Going into any more detail isn’t really relevant to that original point. Regards.

southern doc
Guest
southern doc

A sharp pain in your ear was an event that negatively impacted your health?

Sorry, we’re not talking the same language.

Lisa
Guest
Lisa

As this event was something that occurred during my visit and negatively impacted my health, I asked that the event be put in my record.

southern doc
Guest
southern doc

Again, why did your yell need to be a part of your permanent medical record?

Lisa
Guest
Lisa

southern doc … I was there simply to get a prescription refill for something unrelated. She was doing the routine screen – “take BP, listen to your heart, look in your nose and ears.” My ears were fine – no infection or anything.

Lisa
Guest
Lisa

I want the doc and patient to discuss the notes before the visit is completed. I’ve seen incorrect info much later, and seen a diagnosis years later that I was never told about. Recently the doc pushed an otoscope so far in my ear I reflectively yelled. I asked that the event be put in my chart. I was told it was. I had to call back (unrelated issue) and wanted to confirm it was added to my chart. It was not. I had to go back to the clinic and demand it be included. The doc blew me off… Read more »

MD as HELL
Guest
MD as HELL

Keep your own record. The quality of the encounter should not be affected by the record. If it is, then one of you had a hidden agenda and were not honest in the encounter.

southern doc
Guest
southern doc

“Recently the doc pushed an otoscope so far in my ear I reflectively yelled. I asked that the event be put in my chart.”

Why?

Dr. Mike
Guest
Dr. Mike

Try and imagine having all your conversations and activities documented by another party, and that the other party assumes that you are potentially going to sue them someday. How would that change what they document about what was or wasn’t said in each conversation or what was or wasn’t done in each activity? You should try it yourself – after the fact, document a conversation or activity, and assume that the other person will sue you. See if you can write a note that doesn’t cast your words and actions in the best possible light. Now imaging the other person… Read more »