Open Notes: Is Sharing Mental Health Notes with Patients a Good Idea?

flying cadeuciiWould allowing patients to read their mental health notes provide more benefits than risks?

In a recent article in JAMA  my colleagues and I argue that it would.  While transparent  medical records are gaining favor in primary care settings throughout the country through the OpenNotes initiative, there has been reluctance to allow patients to see what their treaters say about their mental health issues. While this reluctance is understandable and deserves careful consideration, we suggest that several benefits could result from patients reading their mental health notes.

First of all, accuracy would be enhanced  by allowing patients to cross-check what their clinicians say about their symptoms, medication doses, and so forth. Second, allowing patients to review assessments and treatment decisions privately might help to promote a richer dialogue between patient and clinician. Third, patients might learn that their clinician sees them more as a complete person, rather than as a collection of symptoms.

Many patients silently fear that their treater  “will think I’m crazy/whining/lazy/boring”; seeing in print that the treater does not see them  that way—and in fact recognizes and documents their strengths—can be an enormous relief and might therefore enhance the therapeutic alliance.

Clinicians have their own worries about transparent mental health notes that must be considered. Will patients feel objectified by the medical language commonly used in documentation? Will they break off treatment if they don’t like what they read? Will too much time be spent wrangling over details of what has been documented? Will vulnerable patients be psychologically harmed by reading their notes? Although our article briefly addresses these issues, only a trial of transparent mental health notes will provide the data needed to assess them.

Such a trial has just begun at the Beth Israel Deaconess Medical Center in Boston. Culminating many months of careful planning by my colleagues in the ambulatory psychiatry clinic, the Social Work department, as well as the OpenNotes team, we began a pilot project of transparent notes in our psychiatry clinic on March 1. So far almost all clinicians have chosen to participate in the project, and have identified 10% of their caseloads to be included. It’s too early to gauge results yet, but we hope to more fully evaluate the effects of making mental health notes fully transparent to our patients.

Michael W. Kahn, MD is an assistant professor of psychiatry at Harvard Medical School and Harvard Medical Faculty Physician at Beth Israel Deaconess Medical Center (BIDMC). 

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13 replies »

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  3. Hi,

    I’m a psychiatrist in the UK, and for more than 10 years, I’ve written clinical letters directly to the patient, with copies to their other treating professionals. We know the evidence that patients recall only about 25% of what is said to them in a clinical interview, and the letter gives tham a comprehensible record of what was aid. It does force you to explain what you mean, but then, you should be doing that anyway…so psychosis is “a state where the stuff that only usually happens in dreams and nightmares invades your waking life”.
    People with mental health problems are no different from anyone else: the more information you share with them, the more they become engaged in their own care.
    In France, of course, patients have all of their notes. asked if the patients have problems understanding, French clinicians simply say “of course not, we explain it”.
    Go ahead and share the data: it’s their health data, after all!

  4. I find it interesting that so many healthcare organizations claim to be “patient centered” but still struggle with something as basic as sharing notes. This seems to be a no brainer. Cannot expect to engage someone you are unwilling to transparently communicate with.

  5. As a layman I see no problem with two records, one to be shared with the patient (if they patient makes that request) and a second private set for the doctor. No one should be prohibited from keeping a diary or other records for future reference.

    For a more complicated puzzle, consider who (or how many) should have access to the doctor’s notes if that doctor is counseling two or more family members. Hopefully this is not an unheard-of situation. And in that case notes for the doctor’s eyes only should be essential.

  6. I agree that this is the way things need to go. In essence, this is the re-definition of the medical record, changing it from a bunch of personal notes, a billing document, or a medical legal shield, to a communication tool. I am certain many will decry the loss of the “personal notes” side of things, but the ability for patient participation and communication is far bigger of a positive than any negative (as stated).

    I also think the availability to the patient, if combined with mobile technology, would aid in making information to other providers – a fact that is often overlooked by both proponents and opponents. Interfaces are inconsistent and hard to implement. Make the patient the interface!

  7. First, I’ll say I love this. I was hesitant, but I’ve come around.

    Here’s an idea: At some point can you give us a case study on a patient or patients and walk us through how you manage the challenges critics raise? (Hostility, denial, confusion) I think we could all learn a lot from the specifics.

    We treat this as a technology problem, but this is really a conversation about doctor-patient communication ..

  8. The questions raised are fair:
    1. Will patients feel objectified by the medical language commonly used in documentation?
    2. Will they break off treatment if they don’t like what they read?
    3. Will too much time be spent wrangling over details of what has been documented?
    4. Will vulnerable patients be psychologically harmed by reading their notes?

    Some additional criteria may worth assessing:
    1. The error rate/corrections made based on detection by a patient.
    2. Not just additional time in discussion with the patient, but frustration level and a feeling of not being able to document their thoughts fully on the part of the physician.
    3. What are the criteria being used to determine which 10% of patients are being included and the possible data skew because of this.
    4. Are there any legal ramifications to this type of note (i.e. complaints to the patient advocate office, issues raised to a review committee, or formal legal action).

    The entire concept is quite interesting, but the challenge will be in measuring such ‘soft’ criteria and issues as some of those listed above. Lastly, how does such a tool/questionnaire get validated, especially given the relative new-ness of this type of assessment?

  9. Can you tell us about the criteria you’re using for partiicipation?

    What does the ideal participant look like? (I realize this will vary, but what kiinds of things are you looking for in general.) I’ve followed this story in recent months and in general, I like the approach of selectively sharing notes in cases where doing so may be beneficial for a patient or where a patient or caregiver specifically requests access ..

    • Yes, that sounds like, most likely, the _best_ way to do it to me, too. – Except, also care providers/medical experts _not_ being controlled by the results of patient-satisfaction surveys; or having an ability to “force” deliberately inaccurate modifications to doctors’ notes.
      Me being a random citizen and patient; but almost CERTAINLY from a DIFFERENT country than this article or these commenters.

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