OpenNotesOne of our MD members, Peter Elias, tipped us off on our listserv to a post on KevinMD.com from a clinician who was expressing concern about the wisdom of OpenNotes, and fully sharing information with patients in general.

Peter posted a comment, which we thought worthy of its own post, given that it speaks clearly, from the physician perspective, of the philosophy of participatory medicine and data-sharing between patients and their doctors.

When I read a blog post highlighting the alleged risks of OpenNotes or hear a colleague express angst, I think of Colonel Jessep in A Few Good Men. It’s as if they are telling their patients: “You can’t handle The Truth.”

The objection to honest and transparent sharing of the clinical information and thought processes underlying clinical decision making assumes that power asymmetry in the relationship between patients and their clinicians is a good thing and must be preserved. In primary care, this is simply not true.

Certainly I know more about medicine in general than most of my patients. I should: I spent years in training, work hard at staying current, and have done it full time for decades. I also usually (not always) know more about the specific illness, symptoms or treatment at hand than most of my patients. But that is only half the story. It is equally true that they know far more about themselves, and about how their illness and our treatment impact them, than I know.

If a clinician believes it is not merely acceptable – but even necessary – that he hide some of his medical information or concerns from patients for their own good, and without their permission or knowledge, then the reverse is equally true. Patients are not just entitled but actually obligated to hide information about themselves and their health or life from him. I have yet to hear a clinician say this would be wise.

The analogy that we depend on our accountant to do our taxes is off target. We don’t have all our financial information delivered to our accountant and then only know what she tells us.

The concern that patients will see results before we can talk about them is legitimate but overblown. For one thing, it does not apply to office notes: the patient was present and participated in the interaction. If I order a chest film on a patient with a chronic cough, I should be telling that patient there is a possibility of a serious finding. (The patient most likely understands that already, and may in fact have asked for the film because they are afraid they have cancer.) As both a person who has waited for a biopsy result and the spouse of a patient who has had biopsy results showing cancer, I don’t personally believe that waiting a week to be told in the office is any less painful or frightening than seeing the result and then making an appointment in the same time frame to address it (I have experienced both.)

During my 37 years as an actively practicing family physician, I have evolved steadily towards increased transparency. For the last two years I have been doing my office notes ‘out loud’ and in real time with my patients, giving them a copy when they leave. Unlike the many clinicians I hear expressing reservations without having tried this approach, I can speak directly to the actual impact this approach has.

1. It is more work. I spend 60-90 minutes every work day reviewing and preparing the charts of that day’s patients. (Payback: I am much better prepared for the visit, I can focus on the patient rather than the EHR during the visit, and I am totally done charting when my last patient walks out the door.)

2. It makes not just the note but the interaction itself much more collaborative. This is because the note is no longer my private diary of my perspective of the visit, but is our shared record of our process and our plan.

3. I have become much more honest and consistent about dealing with difficult topics. I cannot hide behind secret thought or jargon, but must address failed plans, problematic patient (or clinician) behavior, and possible poor outcomes in a way that we can both understand and use. One of the biggest (and happiest) surprises for me has been how powerful this is and how much it improves my ability to work with patients.

4. It is a powerful tool to prevent (inadvertent) dishonesty. (It will always be possible to be dishonest intentionally.) I am 100% certain I am not documenting things I didn’t do or instructions/explanations I didn’t provide.

5. Patients find and politely correct errors. Most of them seem small to me (though not necessarily to the patient) but some have been of major importance: corrected allergy lists, important added or corrected diagnoses, robust family history when the patient returns with notes made on the record of the previous visit. Occasionally a patient uses the note as a starting point for research and brings back valuable information – a process I have learned to encourage.

6. Patients bring the note home to discuss with family (very useful with a concerned spouse, or with the other parent of a child), or to visits with other clinicians on their team to help with care.

7. The assessment and plan are written in a way that allows the patient to use it as a working document to manage their care and as a reference between visits, and then we can use it as a starting point for the next visit.

I can also speak to some of the things that have NOT happened:

1. Only rarely have patients called upset, concerned, or confused because they didn’t understand the content in the note. They do call to ask questions or get more information – but this has been constructive and appropriate and has often led to significant improvements in process and outcome.

2. Patients have not asked that I change the note.

3. I have not had to leave information out of notes for fear the patient would read it. (Though I am careful to avoid being judgmental, and when I use medical terminology I explain it as I am typing/narrating.)

4. It has not been an issue with psychiatric or social issues. In fact, the need to frame these issues in a way that is accurate and descriptive, understandable, and not judgmental has made raising, discussing and working on these issues easier and more effective. (For example, this leads to consistent, frank and productive discussions of issues of use/diversion/misuse or secondary gain with chronic narcotics.)

I am convinced that (with competent patients) any information that affects their health or the decisions related to their medical care needs to be in the medical record and freely available to the patient.

My bottom line for clinicians who express reservations about transparency in the medical record is simple. Try it. You’ll like it.

What are your thoughts – as a patient, as a clinician, as a policy expert, as a data geek, as any combination of that list? Tell us in the comments.