OpenNotes: Drilling Down to Assure a Healthy Evolution

As the instigators of the OpenNotes initiative, we are thrilled that OpenNotes is being adopted by the VA. Prompted by Dr. Kernisan’s thoughtful post , the ensuing lively discussion, and our experiment with 100 primary care physicians and 20,000 of their patients ), we thought it useful to offer some observations drawing both on our experiences as clinicians and on ongoing conversations with clinicians and patients.

First and foremost, we don’t have “answers” for Dr. Kernisan. Our hope is to contribute to new approaches to these sticky questions over time. And, remember that patients’ right to review their records is by no means new. Since 1996, virtually all patients have had the right to access their full medical records. What’s new is that OpenNotes takes down barriers such as filling out forms and charging per page, while actively inviting far more patients to exercise this right in an easier and accessible way.

We think of open visit notes as a new medicine, designed like all therapies to help more than it hurts. But every medicine is inevitably accompanied by relative and absolute contraindications, and it’s useful to remember that it’s up to the medical and patient community to learn to take a medicine wisely as it becomes more widely available. A few specific thoughts:

Dementia and diminished physical capacity:

When a clinician notices symptoms or signs of dementia, chances are the patient and/or family has already been worrying about this for some time.  Is it safe for the patient to live alone?  What about driving? How and when could things get worse?  They may actually be relieved when the doctor brings up these topics and articulates the issues in a note. Moreover, their worst fears may prove unfounded, and reading that in a note can be reassuring. But we need to consider the words we write so we don’t rush to label a condition as “Alzheimer’s.”  Being descriptive is often better and more helpful than assigning one word definitions. In itself, OpenNotes reminds the health professional to choose words wisely.  That doesn’t have to mean more work, but we believe it can certainly mean better notes that can be more easily understood by the patient.  We urge colleagues to stay away from “The patient denies…,” or “refuses,” or “is SOB.”

Abuse or diversion of drugs, possible substance abuse, or unhealthy alcohol use:

These subjects are always tough, and what to write down has been an issue for clinicians long before they worried about open records. Over the course of our experiment in primary care, we have heard stories from patients about changing their attitudes and behavior after reading a note and “seeing in black and white” what their doctors were most worried about. Though substance abuse may seem like a particularly sensitive topic, at least one doctor in our study is convinced that some of his patients in trouble with drugs or medications did better as a result of reading his notes. And while some patients may reject our spoken (or unspoken) thoughts that we document in notes, experience to date makes us believe that more patients will be helped than hurt, and that it is worth the tradeoff.

Sexual/elder/child abuse…and the aging driver:

Addressing and recording these wrenching issues is also the subject of much debate that long antedated OpenNotes, and at least some states have legal requirements about notes related to abuse…and access to them. And there’s also the issue of abuse of public safety: Dr. Kernisan rightly reminds us how hard it is to address the right to drive with the aging individual whose car may be a second home. The dilemma has long been clear: How to address the balance between helping patients maintain autonomy and self-esteem…and our acting in the public good. From a broader perspective, how OpenNotes interfaces with such issues is intimately related to how society as a whole wants to address them, and indeed we hope this frank embrace of transparency provokes more open and active discussion in these arenas.

All 3 sites in our study have committed to expanding their use of OpenNotes well beyond the study’s primary care populations. They are grappling with Dr. Kernisan’s questions and others; these are all issues that health professionals will need to consider as OpenNotes is adopted (we hope) more broadly.  Here are other things we have been talking about, and we’d love to hear reactions and suggestions from The Health Care Blog readers:

– Should some notes be hidden from patients?  (In our study, physicians wanted this option, but then rarely used it.)
– Should clinicians have an explicit option to keep private notes not visible to patients, such as Dr Sabbatini’s “vest pocket” notes?
– Should all doctors offer OpenNotes? What about residents, fellows, or medical students? And other clinicians – nurses, physician assistants, physical therapists, clinical pharmacists, social workers, etc?
– Should some patients be excluded from access to notes?  Who decides? How should this work?

Our study indicates that many clinicians will change how they write about sensitive topics.  How might the note change? To what extent?

Given today’s focus on transparency and consumers’ enthusiastic response to the idea of shared visit notes, we believe OpenNotes will spread and become the standard of care.  We are committed to working with patients, clinicians, hospitals, payers, and researchers to refine the use of OpenNotes and examine the consequences.  We invite one and all to send us stories, ideas, cautions, and suggestions. It’s not easy to have patients and clinicians join on the same page. We need all the help…and partners…we can get!

Tom Delbanco, MD, and Jan Walker, RN, MBA

Tom Delbanco, MD, MACP, is the Koplow-Tullis Professor of Medicine at Harvard Medical School and founder of the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center. His research has focused on transparency, medical error, and improving the quality of care by drawing on the patient and family perspective. He is co-principal investigator of the OpenNotes initiative funded in large part by the Robert Wood Johnson Foundation.

Jan Walker, RN, MBA, is a health services researcher at Harvard Medical School and Beth Israel Deaconess Medical Center. Since directing patient survey services for the Picker Institute in the 1990s, she has continued to work to understand and improve the patient experience with care, most recently as co-principal investigator of the OpenNotes initiative.