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Should mental health patients have equal access to their notes?

by | Apr 17, 2016

There have been editorialsopinion articles and blogs on the subject of  patients reading their mental health notes on-line, but so far no completed trial yet of Shared Notes, AKA OpenNotes,TM for patients with all psychiatric diagnoses. There isn’t an accurate way just yet to judge the risks and benefits of electronic disclosure beyond our preconceptions and conjecture. There are many reasons put forward for their reason to filter those notes out, and yet, I believe, many more compelling arguments to allow all patients to routinely see their mental health records on-line.

All patients have the rights to their own records. What would it feel like to be able to read all your doctors’ progress notes electronically except your psychiatrist’s? Would you wonder if something was going on behind your back? Would you be angry at being treated like you were unable to handle information about your illness? Would you be uncertain at times because you didn’t remember what the treatment plan was?

Patients reading their notes is not a privacy issue. “Privacy issue” is kind of the knee-jerk buzz phrase when it comes to behavioral health records and I’ve heard it used to justify not implementing Shared Notes in Behavioral Health. Since when is a patient’s own information private from themselves? They are the persons providing that information. The “what ifs”, such as concerns patients might post their records on FaceBook, inviting comment, are unbelievably paternalistic and amount to banning razor blades from all mental health patients.

Shared Notes can improve care. There is no reason to believe that OpenNotes research wouldn’t apply to mental health problems with improved compliance and doctor-patient relationship, and so far research at Beth Israel has been promising. Interestingly, although their published study was on patients having only primary care notes available to them, the study found:

“Patients with mental disorders (defined as 2 visits with a diagnosis of psychosis, depression, anxiety or substance abuse; or one visit with a prescription for a psychiatric medication) wrote more frequently about better communication with their doctors, better care coordination, and increased ability to self-manage and self-coordinate (including decreased feelings of stress/challenge or distraction during visits) than did patients without mental disorders.”

On the OpenNotes website there is a compelling interview with a patient who accesses her psychiatric and therapy notes to good effect.

Shared Notes can improve our notes. Access via Shared Notes feels different to the clinician because it increases awareness of records availability, which while threatening, is likely to improve the quality of the notes. And let’s face it. We professionals don’t always hear or recall patient histories 100% accurately. Anyone who has gotten seen their own medical records can attest to that. If patients have ready access to their notes, they have the ability to contact their provider to correct serious errors.

Excluding mental health patients as a group is categorically discriminatory and creates further stigma. I believe that making sweeping determinations to block records from patients suffering from behavioral health conditions amounts to treating them like second-class citizens. Why would patients with mental health diagnoses routinely need to be protected from their records? On the Epic UserWeb one post said “We have had Open Notes across our primary care clinics for about 2 years. Note; about 1/3 of our primary care clinic visits involve mental health discussions; these are ALL released as part of Open Notes. We plan system-wide Open Notes in May 2016 (300 clinics), all specialties, excluding psychiatry and mental health clinics.” The decision not to share notes is almost always made by class, i.e. by Specialty or Department, not on an individual patient or note-by-note basis. The message to patients, to health care staff, even to the Epic analysts at their respective organization, is that patients with mental health conditions are inferior in their judgment and capabilities.

Electronically sharing notes is too often confused with allowing any access to notes. A lot has been written about whether patients should read their own therapy or psychiatric notes outside of the EMR. Shared Notes is about the easy and immediate on-line availability of information. Choosing not to share notes electronically may represent a more restrictive policy than the current one as mental health patients already have access to their notes through a pencil-and-paper process. Are we “protecting” them from the harm of reading those notes by making it a hassle to obtain them through a more laborious process?

Each provider may have a different, and not necessarily legal, standard of when to disclose. Epic has the capability of being set up so that a provider can opt-in or opt-out to show each note depending on their organization’s set-up. Having to actively allow notes to be viewed is especially problematic. HIPAA says records can be withheld only if to do so would be “reasonably likely to endanger the life or physical safety of the individual or another person”. On the one hand, the clinician knows the patient and is in the best position to judge the potential for harm. On the other hand, given the range of opinions on and fears about whether patients should read their own notes, perhaps the variation between providers would reflect their bias more than their patients’ safety.

Given the immediate availability of electronic notes to patients, an opt-out option for individual notes could be used appropriately under very limited circumstances for all patients regardless of department or diagnosis, but perhaps a peer review should then be requested.  After all, under HIPAA if access is denied, “the individual has the right to have the denial reviewed by a licensed health care professional who is designated by the covered entity to act as a reviewing official and who did not participate in the original decision to deny.” This workflow would prevent undue restrictions on access, while pre-reviewing the denial.

Providers overestimate the complications transparency will create. The most common decision I hear regarding Shared Notes implementation is that the mental health department was omitted, even amongst the country’s most illustrious institutions. Before we picture mental health patients jumping off bridges and firing their therapists and psychiatrists after reading their notes, let’s listen to the people who have actually implemented Shared Notes in their behavioral health departments.

I recently interviewed Paul Schoenfeld, Ph.D., Director of the Center for Behavioral Health at The Everett Clinic in Washington about their experience with Shared Notes.  They see about 6,000 patients per year with the full breadth of diagnoses and their patients have been able to view their progress notes for over a year. They have had no patient or provider complaints. As a culture, their providers are transparent about discussing assessment and diagnoses with their patients and so documentation and patient interaction perhaps did not change significantly except for being more mindful of what is in the chart and not to put in unnecessary detail. Patients recall their medications and other plans better — Dr. Schoenfeld pointed out this is particularly helpful for disorganized and forgetful people such as the ADHD-parents-of ADHD children. There had been the usual anxiety on the part of providers initially, but following a pilot of 4 providers refers to the full implementation as “The Big Yawn”.

On the other hand, who am I to say? I have not, myself, experienced Shared Notes.  I would like to think my notes never express anything in a derogatory manner and are accurate and clear, but being conscious that patients are going home and reading my notes would likely improve their quality. I think they would remind me to explain my thinking to the patient more explicitly while they were in my office as well as keep my progress notes succinct and thoughtful. I tend to disclose diagnoses, and avoid speculative differentials and unnecessary details already. On some occasions I know I would have to deal with an upset patient who did not care for what I wrote, or would want to have part of it redacted. That would be quite unpleasant for me and I might lose that patient from my care. That’s happened before, and it might happen more often, though of course seeing someone else isn’t necessarily a disadvantage when they will receive a second opinion that could reinforce mine, or be a better one. At other times, I will be grateful when patients will correct my mistakes.

Of course, I’m just conjecturing like most everyone else. I’ll be keeping my ears out for more behavioral health clinicians’ authentic experience and research results.

Carol Novak, MD

April 2016

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