A glimpse of OpenNotes findings: “Patients are overwhelmingly interested”

“Patients are overwhelmingly interested in gaining rapid access to their notes … doctors have not experienced significant disruptions to their work.”

Hear hear! That’s from a new commentary published Monday in Modern Healthcare about the OpenNotes project, in which patients have full access to their doctor’s visit notes. We’ve written about it numerous times, dating back to our June 2010 “OpenNotes” project begins: what happens when patients can see the physician’s visit notes? (Check out the Seinfeld clip on that post, in which Elaine tries to read her chart and gets marked “difficult” by the doctor!)

OpenNotes is funded by Robert Wood Johnson Foundation’s Pioneer Portfolio, which likes to study the frontiers, the real leading edge of medicine, to anticipate the future. It was a Pioneer Portfolio grant that funded our e-Patient White Paper, and OpenNotes seems a natural cousin, as it explores what happens when patients become more engaged as partners in care.

The full results of the study haven’t been published yet, but the principal investigators are starting to speak. In the Modern Healthcare commentary, principal investigators Dr. Tom Delbanco and Jan Walker, RN, MBA say: (Emphasis added)

We urge the government, other payers, clinicians and consumers to move even further forward. If consumers are to become truly active partners in their own healthcare, they should be able to retrieve their personal medical information readily, including their doctors’ notes. As doctors and hospitals increasingly use information technologies to embrace transparency and information-sharing, let’s move toward “open notes” and adopt them proactively and eagerly, rather than with mumbling and grumbling.

They continue:

As a primary-care doctor with 40 years of experience with patients, teaching and studying health services, and as a nurse who promotes the use of information technology to improve care, we understand that engaging patients actively in promoting health and managing illness is a long-standing but elusive goal of healthcare. We also believe that giving patients access to their own medical notes may help them manage their care more effectively and join in efforts to detect and prevent medical errors.

Importantly, OpenNotes was designed to include an urban academic setting (Beth Israel Deaconess in Boston), a rural setting (Geisinger in Pennsylvania), and a safety net population (Harborview, Seattle). This will allow detecting which outcomes and attitudes are the same across settings and which ones vary.

A hint of great news to come, for lovers of participatory medicine:

We are learning that patients are overwhelmingly interested in gaining rapid access to their notes and that many doctors appreciate the potential for open records to improve care. … The enthusiasm of patients appears to cut across all lines of age, health status and education. And while many doctors turned down our invitation to join the one-year project, citing fears that their notes would adversely affect their already onerous work flow and frighten or confuse patients, only one doctor who signed up for the study later dropped out, and that was for personal reasons. … Moreover, hallway conversations indicate that doctors have not experienced significant disruptions to their work…

That’s all I can quote here, due to copyright regulations. But clearly the authors are excited, and so am I. As my own physician Dr. Danny Sands has said, “How can patients participate if they can’t see what I see?”

Can’t wait to see the detailed results, as they unfold in journal articles yet to come.

(btw, the full article is behind a paywall, dagnabbit! Isn’t this supposed to be about patients seeing what the doctors see?? Last year’s article in the Annals of Internal Medicine was open access – can Modern Healthcare please do the same?)

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Comments

11 Responses to “A glimpse of OpenNotes findings: “Patients are overwhelmingly interested””

  1. Brian Ahier says:

    As I’ve said, we not only allow patients to read anything in their record, but along with physician and nurse notes there is a section in the chart for patient’s notes. This is what having the patient in the center is all about.

    There is nothing but good that can come from giving patients access to their own data…

  2. Dave,
    This is a notable finding, for sure. But I wonder if the patients participating in the project are representative.

    Some people I’ve known, and not just a few, don’t want to read what their doctors write about them. Maybe some patients just want the “right” to access their doctors’ notes if they choose, which is not the same as wanting to read the physicians’ words.

    • e-Patient Dave says:

      Indeed, we will see, Elaine.

      I’ll note, though, that even “overwhelmingly” is not “unanimously.” I know plenty of people, even in my family, who really don’t care. Fine with me.

      On the other hand, I’ve heard lots of objections from skeptical doctors who think patients aren’t at all interested. I guess that’s why research is a good idea, and it’s important for researchers to report how their sample was selected.

  3. Dan Hoch says:

    this is a great topic, and I can’t resist chiming in.

    I have to echo Elaine’s comment but with regard to the doctors that took part. Clearly, since “many doctors” did not accept the offer to take part, those that did did are not at all representative and so there is a substantial selection bias. The result sound interesting, but need to be taken with that grain of salt.

    • Michael Poremba says:

      Dan,

      The e-patient white paper tries to characterize providers and patients along continuums of engagement in healthcare delivery. Willingness to share notes is somewhat cutting edge and is never going to be universal among providers. But the trend is in that direction. Not all patients are capable of fully engaging with their providers. But those who are want tighter collaboration. So rather taking this with a grain of salt, I see this as one indication of a cultural trend. A trend that is progressing slowly as norms shift over generations and people gradually change their worldviews.

      • Hi Michael! Nice to meet you.

        I may be wrong but I think you may be misconstruing the purpose of this project. My post here is enthusiastic (I advocate for Participatory Medicine, as chair of its society), but a Robert Wood Johnson project wouldn’t have advocacy as a goal. It’s a fact-finding project, to gather evidence.

        I know first-hand (from numerous doctors I’ve personally met at conferences) that a major concern about patient access to records is whether physicians’ lives would spin out of control because of patient questions. I also know many believe patients just aren’t interested in this stuff, and I know from first-hand conversations with family and friends that they have no IDEA there could be any reason to look at their records, and they’re often intrigued with the idea.

        I also have heard repeated rumors that although certain types of patients want it, “my patients don’t.” The classic example is me, the speaker at these events – “You’re not typical,” “My patients are poor, you’re middle class,” “My patients are rural, you’re urban.” That’s why I was tickled to learn recently that the study was designed with three distinctly different populations.

        So we’ll soon know what the evidence shows. Again, although I (writing on the SPM blog) am an advocate for patient engagement, the evidence will show whatever it shows. And I’m CERTAIN the study’s principal investigators would welcome critique and argument about the study design.

      • Michael Poremba says:

        Hi Dan and Dave,

        Dan, perhaps I misconstrued your comment as skepticism of the idea of openly sharing notes. I see instead you have interest in the objective but are only scrutinizing the study and its findings.

        Dave, thanks for the excellent background. As a patient I’m in favor of transparent access to all my medial records and working with physicians in an open and collaborative manner. I expect this is not feasible for all patient-physician relationships.

        As an implementor for an EMR system, I’m curious how open access to patient notes might be best designed to allow for the variability in patient-physician relationships:
        * Each physician decides whether notes are open or closed for all patients
        * Each physician decides for each patient whether all notes are closed or open
        * For each note, the physician determines whether the note is open to the patient

        Similarly, there are some transitionary scenarios of interest if a physician revokes sharing of notes at any of these levels. Do we record the change in sharing status for HIPAA purposes? Do we notify the patient in their records of the change in access?

        I’m curious where this is headed from an implementation standpoint. Thanks again.

  4. Hesham says:

    I have read this article in faculty of medicine forum , http://www.facmedicine.com

  5. [...] we said in November about OpenNotes, (emphasis added) We are learning that patients are overwhelmingly interested in [...]

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