Apr 1 2013

Shedding Light on OpenNotes

Tom Delbanco, MD, MACP, is Koplow-Tullis Professor of Medicine at Harvard Medical School, Beth Israel Deaconess Medical Center. He is an alumnus of the Robert Wood Johnson Foundation Health Policy Fellows program.


In a recent blog post, Anjali Gopalan, MD, a Robert Wood Johnson Foundation Clinical Scholar, weighed the pros and cons of OpenNotes—an effort to share clinicians’ notes with patients that is a stimulating collaboration among a large group of investigators, practitioners and patients in Boston; Danville, Pennsylvania; and Seattle.

Dr. Gopalan made a number of insightful observations that I’d like to comment on, but I need first to correct a fundamental misperception: OpenNotes is decidedly not a software program!!!

OpenNotes is an effort to convince patients, families, and clinicians to share openly any and, most often, all material that pertains to a patient’s care. The goal of such action is to improve communication between clinicians and patients, and to help patients engage more actively in managing their health and health care.

OpenNotes doesn’t depend on electronic health records or other software. Purely and simply, we are suggesting to patients that they routinely ask for a copy of their providers’ notes (to which they are legally entitled through HIPAA). And we are suggesting to clinicians that they routinely invite their patients to read them. Pull down the invisible firewall that we clinicians have long established, and the patient (and others whom he or she wishes to involve) can view the thinking that leads us to conclusions and recommendations.

To be sure, patient portals can facilitate sharing information with patients, and their future potential is enormous. But unblinding the story, the warp and woof of an individual’s experience that’s documented in clinicians’ notes, can also be done by low-tech means such as providing print copies of the notes at the end of a visit or later by mail.

Evolution of the Doctors’ Note

We agree with Dr. Gopalan that visit notes need to evolve in a way that makes reasonable sense to the patient. But at this point we view OpenNotes as a new medicine that will likely help most who use it, has contraindications for some, and that both patients and providers need to learn to use it well.

Many of the primary care providers who participated in the OpenNotes pilot—sharing notes with their patients over 12 months—reported changing the way they write, although we’ve not studied such changes in detail. While some commented on the extra time needed for writing, editing, or explaining notes to patients, many framed such efforts as learning “better documentation—a good thing.”

We have also considered issues relating to (health) literacy, language, ethnicity, culture and, most importantly, the unique characteristics of each individual patient. In our year-long experiment, we found that four in five patients chose to read their notes. One in five did not. Anecdotally, we see people who can hardly read or speak English turning to their family for help in translating and explicating the note. We see patients not only asking for clarification but also pointing out clinically important mistakes in the notes. And above all, as our data demonstrate, we hear from the vast majority of an exceedingly diverse group of patients that they feel more in control, are adhering to their medical regimens better, and are taking better care of themselves.

Evolution of an Idea

We are in the early stages of this “disruptive” and transparent practice of sharing notes with patients. We expect patient portals will help this practice spread. Abbreviations will slowly leave the notes as we change how we write; they are already subject to instant translation through the magic of the Internet. And soon we anticipate that the touch of a screen will transform notes, adapting them both to a language or a literacy level. Rapidly advancing electronic technology will help patients define terms in ways they understand, will offer educational material, and will even integrate patient-generated data with their story.

Moreover, we’re understanding increasingly that transparency in ambulatory care is very different from how it will work as it inexorably invades the ICUs and hospital wards, nursing homes, rehabilitation centers and, most importantly, the patient’s home.

We look forward to further exploring these challenges, as well many others that both clinicians and patients well understand, and we look forward to further collaborative research, perhaps joined also by new partners energized by these comments!

Finally, a plea for help: We want to modify our name, in order to move beyond incorrect assumptions that OpenNotes is software or a company. We are considering “The OpenNotes Collaborative,” or “Collective, Compact, Partnership, Commons,” etc. Send us your suggestions (via our website). We need all the colleagues and help we can get!

Learn more about OpenNotes.

Read the research:

Delbanco,  Walker et al 2010
Walker et al 2011
Delbanco, Walker et al 2012

Tags: Health Data and IT, Patient-Centered Care, Voices from the Field