What Your Shrink Thinks? Pilot Study Opens Psych Records To Patients

(Life Mental Health/Flickr via Compfight)

(Life Mental Health/Flickr via Compfight)

Here’s how far we’ve come beyond the old stereotype of the inscrutable psychiatrist who refuses to do anything more than nod and hum. If you’re a patient in a pilot program just now getting under way at Boston’s Beth Israel Deaconess Medical Center, you’ll soon have a whole new window into your psychiatrist’s thoughts: the mental health notes in your own medical record.

Patient access to personal medical records is a growing trend, but the pilot takes it a pioneering next step, into mental health records that are often kept closed to patients. The program’s rationale — the expectation that the tactic will lead to better care — is laid out in “Let’s Show Patients Their Mental Health Records,” an article in this week’s Journal of the American Medical Association.

I spoke with its first author, Dr. Michael Kahn, a psychiatrist at Beth Israel Deaconess. Our conversation, lightly edited:

CG: Here’s my colleague’s response to the idea of patients reading their psychiatrists’ notes: ‘Omigod, that’s terrifying! Do you really want to know what they think of you, especially if you already have issues?’ How would you respond?

MK: My main response would be that ‘what they think of you’ might actually be a great relief. Many patients are quite frightened that the doctor ‘will think I’m crazy,’ and the meaning of that varies from patient to patient. Mostly, those patients are not out of touch with reality; they’re just overwhelmed, and they’re often very reluctant to ask their doctor about it because they’re afraid their doctor will say, ‘Yes, you are crazy.’

So when they read in the note that “The patient is struggling with anxiety or depression, and should get better with this treatment,” that’s often a great relief to them, because they often see they’re not as impaired or deficient or defective as they feared.

I imagine the response from many psychiatrists would also be, ‘Omigod, that’s terrifying.’ You write in JAMA that this ‘feels like entering a minefield, triggering clinicians’ worst fears about sharing notes with patients.’ And you mention specific fears — how will a patient with a personality disorder react upon learning of that diagnosis? What if patients are outraged by the terms used? How do you respond to doctors’ fears?

The first thing is to recognize that it’s a totally natural, understandable and honest fear. I think we all learn in our professional development to use these terms — you might call them jargon — that are often but not always accurate, and often but not always have more pejorative connotations.

I think clinicians know this and are concerned that if patients read, for example, that they have Borderline Personality Disorder, then they will feel insulted, shocked, demeaned. I think this is a totally understandable and reasonable anxiety on the clinician’s part, but I think for many patients — and I’ve seen this many times — if it’s introduced to them in a tactful way, they can get the message that “The reason your life is in such turmoil is not because you’re a bad person but because you have this thing we call Borderline Personality Disorder that has these features.” And patients often say, ‘Oh my God, that’s me!’ and that’s actually a relief; they feel less alone and stigmatized.

So overall, the expectation is that patients being able to see these notes would far more often be helpful than harmful?

That’s the expectation, which we plan to test. My colleagues Pamela Peck and Meghan Shanahan get the credit for organizing the pilot and carrying it out.

Pam Peck, who’s the clinical director for the hospital’s department of psychiatry, tells me that all the psychiatrists are participating and the initial aim is to open mental health records for a carefully selected 10 percent of all ambulatory patients. That began last month, and of course it’s very early, but can you say what you’re seeing?

It’s too early. It’s just getting going, just getting off the ground.

It sounds like part of this involves psychiatrists developing almost a new skill, in terms of writing notes that you know will be shared with patients, right?

I think there are two main skills that can be developed. One is the skill of accentuating the positive. As clinicians, we tend to focus on what doesn’t work and has to be fixed, as opposed to also indicating what’s working well and is a strength and helps people to cope. So one tool is to highlight people’s positive accomplishments and strengths, which also tends to be gratifying to the patient because they feel the clinician sees them more in totality, rather than as just a collection of problems.

Step number two might be summed up as describing rather than labeling behavior. So rather than saying a patient ‘is being hostile and difficult,’ you might say, for example, ‘The patient indicated clearly that she did not want to have a discussion with me at this time about topic X, and I told her that I’d like to continue this discussion in the future.’

But these notes are also for other fellow staffers. Isn’t something lost if the clinician needs to warn other staffers that this patient is hostile and difficult?

I would say no, actually, because again, I think one clinician saying ‘The patient is hostile’ is another clinician saying, ‘The patient was able to get something off of his or her chest.’ So I think by describing the behavior rather than labeling it, you get a more accurate picture.

Is a part of the motivation here that more and more, we’re thinking that it is a patient’s right to be able to read what’s written about them in the medical record?

Partly, it’s more of a right — and it improves patient care.

Right, you wrote that it’s important for patients to be able to correct errors.

Exactly, which is not an uncommon occurrence.

Example?

The patient could say, ‘You wrote in your note that I was on 20 milligrams of a drug, and you forgot that in our last meeting we reduced it to 10 milligrams.’

You also wrote that there can be a special power to seeing things in writing for some patients, in that it can help catalyze behavior…

Right — particularly for patients with addiction problems. Many of them are used to being told over and over again by those close to them and their doctors that they really need to stop drinking, it’s ruining their liver, if they keep it up they’ll be dead, and so on. Some patients just tune this out and feel, ‘I’ve heard that, why keep repeating it, it’s alienating to me.’

So the idea is, if a doctor were able to talk in a non-judgmental, compassionate way in the notes about the risks the patient is facing by continuing to drink, the patient could read it in private and perhaps be able to have a more contemplative approach to the problem. They could feel less like they were bring cross-examined. It’s not going to work for everybody, of course, but there may likely be a subset of people for whom that opportunity leads them to say, ‘Hmm, maybe the doctor does have a point after all,’ without feeling that he or she loses face by making that admission.

Is this pilot program a first?

We found out just before the JAMA paper was published that the VA has been doing something like this for a period of time, but it’s certainly a first for our hospital and it would be a first for most health systems. Most health systems do not do this.

Would access to the mental health notes be retroactive at all? Could you look back years?

No. Patients would only see notes written after Mar. 1.

At the end of your piece, you note that there can be a tendency on the part of health care staffs to use language that’s “potentially offensive to the uninitiated.” Can you speak to that, to lack of respect in medical language?

This is a topic that’s familiar to all people who are in medicine in general and all the helping professions, I think. Certain clinical terms get used as proxies for less flattering attributes of the patient.

So to say the patient, for example, is “a borderline” can be proxy for saying, ‘This patient is very tough to work with and makes me feel very frustrated and angry at times.” Or to call a patient ‘a narcissist,’ can mean, ‘This patient tends to only think of his own concerns, ignores me, doesn’t do what I want and it really annoys me.’ This is, I think, no secret to people. On the one hand, these terms — borderline and narcissistic — can be very useful, but I think can also be overused and misused in a way that I think isn’t helpful to patients or clinicians.

When you tell outside colleagues in psychiatry that you’re doing this, what is the reaction you tend to get?

I would say cautious skepticism.

A good friend of mine who’s a psychiatrist said, “What if I have a depressed patient who decides to read my note when she’s alone at night with her iPad in bed. How will she react?” It’s an interesting scenario, and I thought, “Well, I suppose it depends on what the note says. Maybe she’d read such a note and think, “Wow, this shows that Dr. So-and-so really understands me and is really trying to help me. Now I can get a good night’s sleep.”

On the other hand, she could see that she has major treatment-resistant depression and look it up on the Internet and see that her chances of remission are very low…

It does require the doctor to introduce a certain amount of non-euphemistic circumspection into the note. You’re not trying to sugar-coat or pussy-foot around but you have to be circumspect, and that just means being cautious while maintaining accuracy.

And you do note that it’s still possible for doctors to exclude some notes.

That’s right, for the relatively rare patient for whom the psychological risk of reading the note would outweigh the benefits, there still can be a barrier put up so they don’t automatically have access.

Readers, the most obvious question: If you could read your psychiatrist’s notes about you, would you want to?

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  • djanick

    I guess I did not realize how backward my field still is. I am a psychiatrist and it is somewhat routine for me to share with my patients, what I have written about them. They can request their complete medical record at any time. Frequently, I will read to them excerpts directly from my notes, if it comes up “what did we talk about last time” or if I am explaining my rationale for a clinical decision. Occasionally I will read a segment back to them while they are talking to me (typed into Electronic Medical Record), to verify that I got it right. True, I have a relatively healthy outpatient practice, but a collaborative relationship with patients should be the norm, not the exception for “a carefully selected 10%”. Occasionally I have had a patient who seems to have delusions and who wants me to agree their interpretations of events are not delusions. I keep the emphasis on our joint goal to reduce distressing symptoms and I soft-pedal the “delusional” label. They will not find anything in the chart that they have not heard from me directly. If you think something is harmful, don’t write it. Think of an empathic and diplomatic way to write it. Imagine yourself in their shoes. It is a great honor to be trusted to treat someone’s brain and mind. We need to be earning that trust.

    • Shannon

      I completely agree with everything you mentioned. I’m graduating next month with my degree in Psychology, and it is relieving to hear the genuine care you have for your patients. Naturally, I’ve experienced personal issues of my own and I am not one to openly share such private thoughts and details of my life with just anyone that I meet. It isn’t easy for anyone to discuss their honest thoughts and struggles, and to be allowed to look inside another’s world should be considered an honor and privilege. It’s crucial for patients to feel trust in their doctors, and doctors need to respect that trust.

  • stmay

    These reason why notes prior to March 1 will not be available is obvious – to give psychiatrists a heads up and the opportunity modify their notation style to a “gentler, kinder” style – which may be less direct, less honest, less revealing. We already know this has already happened in general medicine – who wants to piss off a patient when they will on Yelp and say what an awful doc you are and ruin your livelihood because they didn’t like your directness and honesty? When your pay will depend on patient satisfaction, why do anything that will risk getting a lower satisfaction score?

    Dishonest documentation and abdication of accountability to truth truth in medicine is already here.

  • KarenPage

    There is a very clear delineation between “psychiatrist” (M.D.) and a psychologist/therapist. A psychiatrist doesn’t keep “therapist notes” because he’s not a therapist.

  • Stacy Cohl

    One of the biggest reasons I discontinued my therapy was because I didn’t know what this impassive man thought was going on in my mind. I would have found reading his notes extremely helpful. But I would feel completely cheated of the truth if he were to tailor the notes for my sake. If I’m going to read my therapist’s notes, I want them to be uncensored.

    • stmay

      It is human nature to please others and avoid conflict, so you can be sure if patients are encouraged to review their notes, the content will change. It is inevitable.

      • Stacy Cohl

        You’re so right, stmay. It’s unfortunate, though.

  • James Brown

    One reason it may be confusing is that there is a difference between “records” and “notes.” The billing notes, progress notes, therapy notes that goes into a client’s chart is considered part of his/her record and must be made available to the cleint upon request. However, if the psychotherapist has any raw notes that he took during sessions, those are usually not made available when responding to the request for your records. The raw notes are considered “super confidential” and the federal HIPAA laws are more stringent about releasing raw notes. The majority of the time, what you get are the rewritten, “cleaned up” notes, perhaps without the clinician’s musings, concerns that were later dismissed, questions to ask himself or the client later, transient DSM language, doodles in the margins, etc…

  • Terri DiA

    I spent 6 years in therapy after I was initially diagnosed with BiPolar disorder 15 years ago. periodically Elizabeth would take notes during our sessions, at times I would ask her what she just wrote. More often than not it was a struggle to get her to tell me. Had it not been for the fact that I was making noticeable progress working with her I would have found someone more open with me about my complete diagnosis. I had asked her once what my complete diagnosis was and was basically told, “you know you’re bipolar and co-dependent and we’re working on that”. I would only find out many years later that there were additional personality disorders that I had not been told about. I will give Elizabeth this, even though she did not tell me the full scope of my mental health she did treat me for the other conditions during the course of our years together. However, I would have liked to have known when I asked exactly what I was dealing with. I was a very active participant in my treatment often combing through bookstores for self help books related to my disorder to better help me understand what i was dealing with. had I known about the other conditions I would have been studying them too. Not knowing, I believe, took longer for me to reach the level of mental health necessary to function better on a daily basis. I felt somewhat betrayed when I finally found out the full truth. Since my shrink is only treating me for bipolar disorder via medication, not active therapy, I’m not as concerned with what those notes say.

  • Scott

    I’ve been a mental health therapist for 15 years, in private practice and community mental health. I’ve never heard of records not being accessible to patients. While this is clearly a positive development, I’d like to hear why Deaconess thinks this is new.

    • James Brown

      It may be the difference between “records” and “notes.” Raw psychotherapy notes are different (and have a higher level of HIPAA confidentiality) than billing notes, progress notes that are often found in mental health client records in community mental health.

      • Scott

        Good point, James. That would help make sense of it. Not totally sure that’s what they’re saying though. One of Dr. Kahn’s examples is of what it would be like to have a patient discover through the new process that their psychiatrist thinks they have Borderline Personality Disorder. In my experience, that’s something that would likely be indicated in the assessment, treatment plan, and progress notes (as well as psychotherapy notes). And why would you not tell a patient their diagnosis?! They’re the ones doing most of the work to achieve relief from the disorder (at at least from the symptoms).
        Also, he’s talking about the notes as something that clinicians share. I admit to not being very familiar with psychotherapy notes, because in community mental health we usually don’t have time for this level of processing due to huge caseloads. But aren’t psychotherapy notes normally for purposes of the individual clinician, and sometimes for a clinical supervisor? They have to be stored separately from progress notes, so I’m not sure that’s what Kahn is talking about, because he discusses them as something the treatment team is sharing.

  • Nicole

    The VA does do this. I had a consult for possible adhd and it was, in fact, a great relief to read the Doctor’s notes and see what their professional opinion was. I hope this study becomes the norm for the civilian health care industry.

  • Gail Shulman

    Given the idiotic forms dreamed up by the “Massachusetts Standardized Documentation Project” that community mental health centers are being forced to use, I would be ashamed to share notes with my patients. The forms are designed to measure progress toward the achievement of simplistic “behavioral goals” and exist solely to guarantee reimbursement by insurance companies. Psychotherapy, which was once a practice that blended art and science, has been reduced to a mindless pseudoscience which has no relationship to the patient’s inner life. The corporate model triumphs again!

  • sundog1973

    Patients are no more qualified to understand or interpret their psychiatrist’s notes than the notes of their cardiologist. This idea of psychiatrists using “offensive language” to describe a patient’s condition is offensive itself, and patently ridiculous. The idea that a physician would describe a patient’s medical condition in such a catty and obnoxious way strains belief. I think it says more about Dr. Kahn’s perception of his field that it does about reality. Embarrassing, pointless, and at worst, foolish.

    • Miriam Breslauer

      I am able to understand the notes of all the medical professionals I have seen, including cardiologists. It took a while and a lot of research on my part, but it was a necessary part in understanding my rare genetic disorder. Doctors of all types like to think they are the only intelligent people in the world and they dismiss the capacity of others to learn and research. Even people with “average” IQs can learn medical terms and how they are impacted by them if they are willing to put forth the effort.

      One of the problems of psychiatry is some areas of their profession are total garbage based on the dismissal of women having health problems.

    • http://irasass.wordpress.com Ira Sass

      Patently ridiculous? If only. I’m a community mental health worker and I’ve seen all kinds of offensive things in records, including a psychiatrist who started off a note with “This is an obese, cantankerous woman.” To say nothing of the persistent misgendering of transgender clients by mental health providers.

  • Stephanie

    I requested my medical records after ending therapy with my first therapist (not a psychiatrist) which consisted primarily of his notes. After reading them, I realized why I had not found our sessions very useful–we were on totally different pages not about what was going on but about what was important. I had wasted my time. I then found someone who understood not just the basics of what was going on but also who I was and what I needed most and it made a dramatic difference. Yes, if I could read a psychiatrist’s notes on a weekly basis, I would want to.

  • Jan Hammer Is So Rad

    I have never been to a therapist and always assumed all medical records, including notes, had always been available to patients. Very good article, glad I read it.

    • Scott

      I’ve never heard of records not being available to patients. Sometimes it takes a week or so, and maybe a nominal fee, but I don’t think it’s legal to keep patients from their records. This article confuses me.

      • Vicki McDonie

        Notes not records. Read James Brown comment explaining this.

        • Scott

          Please see my reply to Jame Brown comment.

  • http://DyrePortents.com Dyre42

    I stopped speaking to my therapist after he took my super powers away.