Now Reading: Inviting Patients to Read Their Doctor’s Notes: Patients and Doctors Look Ahead



It’s been almost 40 years of publications and studies supporting patients in seeing the full content of their medical records, and physicians are still divided in their feelings about this. I personally experience this pretty regularly in dialogue with my health care colleagues.

Patients are not as apprehensive, which is a bit of an understatement. This is what the paper “Inviting Patients to Read Their Doctor’s Notes: Patients and Doctors Look Ahead,” published in the Annals of Internal Medicine today demonstrates (I will update this post with the URL when it’s available).

I have written about OpenNotes ( @myopennotes ) project recently and in the past (see the list of my posts here ). OpenNotes is indeed my 2nd favorite Robert Wood Johnson Foundation funded project (there are so many great ones! Aligning Forces for Quality @aligningforces is #1). This paper and accompanying editorial do not describe the results of the study, that’s coming later in 2012.

“The enthusiasm of patients exceeded our expectations”

The quote above is based on the findings that:

fewer than 1 in 6 patients was concerned about being worried or confused by reading their notes. Moreover, contrary to our hypotheses, we did not find that younger or more highly educated patients who responded to our survey were more likely to agree with the benefits than those who were older or had less education. It was also striking that many patients would consider sharing their notes with other people, including other doctors.

Figure 1 in the paper visually demonstrates that the enthusiasm is not uniform among physicians. The authors state:

The PCP respondents who declined participation in the project were much more pessimistic about open visit notes in general than were participating PCPs.

This is the essential finding, which I equate to, “here’s something in health care that most patients want to receive, but not all doctors want to provide.” In this situation, there’s a perception gap.

The editorial in the same issue, Access to the Medical Record for Patients and Involved Providers: Transparency Through Electronic Tools provides the experience from at least one institution (University of Texas M.D. Anderson Cancer Center). And, maybe there isn’t really a gap at all, once you go from talking to doing.

I read this editorial with a bit of trepidation, because I know all the phraseologies that physicians use to elegantly say “no” through prose (“needs to be studied more”, “more questions than answers” etc etc). All of that melted away for me when I reached this simple declarative within:

Why such caution?

The rest of the editorial discusses the experiences of patients and physicians with this full access since 2009. They say “Patients have become avid readers of their notes,” and:

There have been no adverse consequences and generally positive feedback from patients and physicians. Although physicians occasionally complain about the time it takes to explain something they wrote, feedback from both patients and physicians has generally been positive.

There is a healthy list of questions at the end of the editorial about the practice and the “we must study its impact” statement that ends so many discussions of this topic.

However, in the era of OpenNotes, questions like this have an answer on the horizon. The work to date provides documentation that there is a difference of opinion between patients and (some) physicians about the benefits of patient access to this part of the medical record. Good to know this and good to respect this, because division biases towards inaction, as they say in the LEAN world.

Luckily, OpenNotes is staffed by an all-star cast of health services researchers with an interest in understanding what the consequences of this openness are, in a rigorous way.

It will be worth the wait. And don’t count me among the pessimistic, in this or in anything :)

Similar Posts:

6 thoughts on “Now Reading: Inviting Patients to Read Their Doctor’s Notes: Patients and Doctors Look Ahead

  1. Pingback: Ted Eytan, MD

    Now Reading: Inviting Patients to Read Their Doctor's Notes: Patients and Doctors Look Ahead http://t.co/hI9x84bZ from @myopennotes project

  2. Pingback: Steve Downs

    Now Reading: Inviting Patients to Read Their Doctor's Notes: Patients and Doctors Look Ahead http://t.co/hI9x84bZ from @myopennotes project

  3. kayt havens

    Ted. I always find my day is better after reading your posts. You creatively guide me into new territory which is always fascinating. I think that it is fear that keeps physicians hesitant to share notes with people– fear of not knowing enough– so if the note could become a place where information gathered today (ie today’s visit) could be documented honestly– a health stream could be created– including specialists notes then each new documentation becomes another piece of the “puzzle” of a new disease, its presentation, at what stage etc. Even cooler would be a way in the plan to generate new questions that need to be answered to further the process around healing.– Often, the diagnosis is apparent but many times input from the pharmD (drug interactions) the social worker etc can make a huge difference in working with a person.

    OOOh! would be fun to work on something like this– also, Tom Delbanco has been doing this for a long time. So cool to know where he is working now.

    Warmly, Kayt Havens

    Reply
    1. tedeytan

      @kayt havens Dear Kayt,

      I’d say that same thing about your comments :). I say yes to everything. How many of our patients are now documenting their health streams already, in places like….you know those places, and we don’t have a way to integrate their most important musings into how we listen to them.

      Maybe this (and you) will open that door,

      Ted

      Reply
  4. Sue Woods

    “maybe there isn’t really a gap at all, once you go from talking to doing”
    YES! As most things in life, anxiety of the imagined is bigger than the real thing.

    When we finally get to the “doing”, benefit will become more palpable as we do the right comparison: sharing notes vs. our current state — patients not knowing, not remembering, feedback and communication not happening, preparation inadequate. We can wait for more results, but we already know what to do!

    http://www.sharedhealthdata.com/2011/12/19/when-it-comes-to-patient-access-to-clinic-notes-doctors-worry-but-patients-dont/

    Reply
    1. tedeytan

      @Sue Woods Dear Sue,

      Well said – if we know our patients want something and we believe that it’s harmful not to give it to them, why wait. Especially considering how MANY things we’ve given/done to patients that they didn’t want and were harmful ( long list ).

      Glad you are adding to the knowledge base here, and with OpenNotes we didn’t have to agonize over whether it should be studied or not, because it is being studied,

      Ted

      Reply

Leave a Reply