Across America, people are gathering around virtual water coolers to talk about OpenNotes. If you've been too busy caring for patients to stop for a sip, I'll fill you in.
This summer a team of physicians and nurses launched OpenNotes as “a demonstration and evaluation project…in which more than 100 primary care physicians (PCPs) are inviting their patients to read their visit notes through secure electronic patient portals.” They hope to gain insight into “the feasibility, benefits, and harms of providing patients ready access to electronic doctors' notes” (Delbanco T, Walker J, Darer JD, et al: Ann Intern Med 2010;153:121-125).
When I first heard about OpenNotes, I voiced my reservations, joining the fray about whether easy access to doctors' notes is a good or bad idea. Surely it would increase demands on clinicians' time, with patients calling or emailing for further clarification and/or to discuss what clinicians consider insignificant details. And it could threaten clinician-patient bonds. I was imagining patients who, misunderstanding the notes and drawing inaccurate conclusions, experience unnecessary fear, guilt, anger, confusion, frustration, or despair. Lastly, patient care might suffer whenever clinicians refrain from recording useful information for fear of patients' reactions.
My knee-jerk response surprised many, since I devote most of my time to helping patients take an active role in their care. Clearly, open notes support my efforts by offering patients opportunities to:
* Pick up serious inaccuracies and avoid medical errors.
* Clarify and reinforce their physicians' findings and recommendations.
* Dispel unfounded worries.
* Gain insight into their physicians' decision-making.
* Further accept and adjust to new diagnoses or changed prognoses.
* Feel more invested in the decisions and motivated to comply with therapies.
* Include family and other caregivers in their care.
No arguments there. My problem had to do with compassion.
In the care of patients, breaking news—good or bad—and making recommendations are dynamic conversations in real time. Clinicians choose which facts and conclusions to share after considering each patient's medical situation and communication style, as well as level of medical knowledge and preference for information. While monitoring patients' questions, comments, head nodding, furrowed forehead, eye contact or tears, clinicians continually adjust what they say.
In contrast, when clinicians write and dictate notes they strip the filter of compassion—those words and actions that help patients hear and process the truth in healing ways.
So besides the opacity of technical terms and acronyms found in chart notes, everyday words and phrases that mean something different in medical contexts might offend patients. “My doctor wrote ‘patient denies alcohol use,’ as if I'm lying!” Or, “My doctor sees me as an obese diabetic?'”
Most troubling are physicians' assessments and plans. The telegraphic style that helps clinicians provide efficient, high-quality patient care, unfortunately, can sound heartless or hopeless to patients. “My doctor said my lump is probably benign, but the chart says ‘r/o recurrence.’” Or, “I felt hopeful about this new chemo regimen until I read in my chart that my prognosis is ‘Poor,’ with a capital ‘p.’”
On a more subtle level, clinicians who wisely chart disclaimers such as “risks and benefits reviewed” are tipping their hat to the potential for patients to become courtroom adversaries.
Such scenarios suggest reading physicians' notes can't be good for patients. Or can it?
That I've even asked proves I've been thinking like a dinosaur. Patients already have the right to review and amend their charts. They've had it since passage of the Health Insurance Portability and Accountability Act of 1996 (HIPAA). And information technology is here to stay. I believe it is just a matter of time before electronic medical records are universal and patients read their online chart more often than not.
The leaders at the Institute of Medicine got it right when they “urged society to view the note not as an artifact, but as a living interaction document shared between patients and providers.”
Today's clinicians face the challenge of crafting notes that are both optimally useful to the health care team and healing—or, at least, not harmful—for patients who read them.
If I were in practice today, I would train myself to stay mindful of patients who may read what I write and dictate. My staff would offer or refer to a patient-centered glossary of medical terms and acronyms, and we would provide a time and place for patients to ask questions and recommend corrections.
Maybe I'd require patients to first sign a release form. Doing so could give me a platform for preparing and reassuring patients, reinforcing my commitment to their well-being and nourishing our hope: “The purpose of these chart notes is to help your health care team do the best job for you. It contains information that you may find upsetting. Remember: A prognosis is not a prediction, but a statistical estimation. We can expect and prepare for the likely outcome while striving for the best possible outcome.”
As for charting about the sticky issues of patients' emotional and psychological adjustment, I don't have an easy answer. I might design an off-the-record” notepad to jot down reminders of findings, impressions, and conclusions that don't need to be in the chart, but might be helpful to me—and only me—at a later date.
Patient access to online charts is not some dramatic shift in medicine, but rather the next logical step in today's tide of increasing transparency. The OpenNotes project is a call to action for clinicians to embrace the chart as a means of strengthening clinician-patient bonds. The challenges will be great. But, as I hope to explore in a future column, I believe the rewards will be greater.