OpenNotes: The Results Are In

A few years ago, Tom Delbanco and Jan Walker pitched us with a simple idea: Patients should routinely be able to see the notes that physicians write about them.  Now it’s true that we all have the legal right to see these notes, but obtaining them is anything but routine. The process involves phone calls, faxes (sic), duplicating fees and all sorts of other demoralizing steps. The net result is that reviewing your doctor’s notes about you is a rare experience.

Tom and Jan said that the physicians with whom they had spoken about this idea were split. Some were interested, some were resigned: They recognized that transparency was an increasingly powerful wave and that the world seemed to be heading this way, and the others thought they were crazy―notes were for documentation and communication among doctors and were never intended for patients.  The arguments were of a religious quality―they were about belief and values.  The obvious solution was to test the idea and let data help sort it out.  Today, with the publication of the study results in the Annals of Internal Medicine, that debate is now illuminated.

One hundred and five primary care doctors, more than 19,000 patients and 12-months of testing at three sites has brought us to some striking findings: Patients overwhelmingly support open notes; they report significant benefits from it; and doctors reported that the effects on their practice have been minor. I encourage you to read the full paper so you get the full context (and do pay attention to the limitations section). You’ll find a number of interesting results. Here are three that I think are especially worth reflecting upon:

1. 60-78% of patients (depending on the study location) reported that they took their medications better. This is self-reported data, so the numbers might be exaggerated, but this finding, along with other results related to taking better care of oneself and understanding one’s health conditions better, suggests there’s a significant potential for clinical benefit.

2. 86-89% of patients said that open notes would be an important factor in choosing a provider or a health plan. If I were a provider, I’d pay attention to this result, which suggests that there might be good business reasons to adopt open notes.

3. 99% percent of patients wanted to continue with open notes. Wow — I’m not sure 99% needs much elaboration.

So we’ve found a simple intervention that:

  • Appears to have clinical value;
  • Doctors acknowledge is no big deal; and
  • Patient support for it is so high that they’ll prefer providers who offer it.

It sounds like a winner. It sounds like a practice that should quickly become the norm.  It sounds like patients should demand it and that providers should figure out how to get ahead of that demand.

That’s my perspective at least, but I have to admit that while these results look pretty clear cut to me, I’m close to the project and no doubt I’m biased.  I might be missing something. So help me out: Are there any good reasons why we shouldn’t try to spread this practice or has the time for open notes arrived?

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

10 replies »

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  2. Not sure where you want to go with this, but the answer, to my best knowledge, is: none. The only hindrance is organizational in nature, and this organizational obstacle is probably perpetuated by culture, technical/oragnizational factors and physician opposition. There probably is also not too much patient interest – I see in our EMR how many patients decline to see lab values etc. online when they are specifically asked/encouraged by our institution to do so. See 1st paragraph of the OP.

  3. I am not going to be overly involved into this discussion and I don’t feel to strongly about this either way, but:
    -what doctors have to communicate is not always pleasant to the consumer/patient (substance abuse, noncompliance, erratic and abusive behavior in and outside the office, malingering, and even though it should not be felt to be negative/discriminating by patient or provider (but it very often still is), also psychiatric comorbidity and somatization disorder.
    -there is huge selection bias and the response rate for the survey was only 41%
    -self report does not prove anything. How about some EBM in this field, before jumping to conclusions?

  4. Pardon me for being uncharacteristically ENTHUSIASTIC :-), but although this wasn’t my study (in design or execution), I’m every bit as excited by these findings as a scientist would feel at the discovery that a world-changing hypothesis has EVIDENCE!

    In speeches lately I’ve been saying “It’s a particular kind of perversion to keep people away from information and then sneer at how little they know.” Access to medical journals, abominably formatted lab reports (see Thomas Goetz’s TED talk), and lockout from the medical record are all things that keep consumers in the dark. Since healthcare needs all the help it can get these days, I sure hope people will try opening the

    Gimme my damned data, as somebody said. Hooray for Ross Martin’s song of that name: http://bit.ly/

    Look: I know it’s hard when culture changes – our expectations about who’s capable of what, and who should do what, get jangled and rearranged. In healthcare, patients (often described as irresponsible, non-compliant, and sometimes just charmingly naive) are turning out to be interested, if we let them SEE the information.

    As Accountable Care roles out, I’m increasingly finding providers expressing interest in the role of the patient – which, by the way, is one of the top 3 in TEDMED’s Great Challenges for the current year. There’s been reasonable skepticism about whether ordinary people can tolerate the medical details, much less be INTERESTED in them. Now, finally, in a well-designed study, we have the answer.

    And I LOVE the bonus finding (that 7 out of 8 patients said open notes will be a factor in choosing providers. Boy, THAT ought to get management’s attention in this era of industry change, competing for a shrinking pot of gold! At last, consumer preference might start to have economic impact. Woot.

  5. A patient essentially pays for the visit and is the subject of the notes. Considering these and also the legal right, why shouldn’t there be any easy way for them to view their physician’s notes? It is important for students to take notes in a lecture because it isn’t enough just to hear what is being said. Perhaps seeing the notes re-enforces what the doctor tells them.

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