Inviting Patients to Read Their Doctors’ Notes: Patients and Doctors Look Ahead: Patient and Physician Surveys
Jan Walker, Suzanne G. Leveille, Long Ngo, Elisabeth Vodicka, Jonathan D. Darer, Shireesha Dhanireddy, Joann G. Elmore, Henry J. Feldman, Marc J. Lichtenfeld, Natalia Oster, James D. Ralston, Stephen E. Ross, and Tom Delbanco, Ann Intern Med December 20, 2011 155:811-819

Feeley T, Shine K. Access to the Medical Record for Patients and Involved Providers: Transparency Through Electronic Tools. Annals of Internal Medicine. 2011;155(12):853-855.

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:

• Now Reading: OpenNotes results are HERE – “little impact on doctors, 99% of patients recommended continuation”
• “I’ve only been interested in this for about 30 years” – talking with Tom Delbanco, MD and Jan Walker, RN, MBA about OpenNotes
• Now Reading: “Patient review (of doctors’ notes) remains the rare exception, and roadblocks abound” : OpenNotes Project (Annals of Internal Medicine)
• Now Reading: The sustained psychological distress from not sharing information with patients
• Photo Friday: Patient access edition – @MyOpenNotes visits My Health Manager