We congratulate Martin1 on his thoughtful description of how he has opened clinical notes to his patients. We write in response from two perspectives. One of us (D.deB.) is a patient who has become active in the world of patient engagement,2 a switch in careers triggered by widely metastatic renal carcinoma, now in remission for several years thanks to superb care by physicians and nurses in primary care and oncology. The second author (J.W.) is one of the leaders of the OpenNotes initiative3 and a health services researcher, with a background in nursing. We touch first on several points that draw on a growing national experience with fully transparent medical records and then offer the perspective of a patient and consumer advocate.
More than 4 decades have passed since the call for “giving patients their medical records” was first proposed to increase patient engagement in health care delivery.1 Today, this vision—once considered radical—is quickly becoming reality, with millions of Americans routinely accessing their medical records through web-based patient portals.1
The electronic health record content that patients can access online is expanding to include physicians’ documentation of patient visits. Recent studies evaluating OpenNotes, a patient-centered initiative enabling online access to providers’ clinical notes, have demonstrated high levels of patient utilization and improved self-reported understanding of care planning and medication adherence, resulting in patients “feeling more in control of their health care.”1
Background: Inviting patients to read their primary care visit notes may improve communication and help them engage more actively in their health care. Little is known about how patients will use the opportunity to share their visit notes with family members or caregivers, or what the benefits might be.
Objective: Our goal was to evaluate the characteristics of patients who reported sharing their visit notes during the course of the study, including their views on associated benefits and risks.
Methods: The OpenNotes study invited patients to access their primary care providers’ visit notes in Massachusetts, Pennsylvania, and Washington. Pre- and post-intervention surveys assessed patient demographics, standardized measures of patient-doctor communication, sharing of visit notes with others during the study, and specific health behaviors reflecting the potential benefits and risks of offering patients easy access to their visit notes.
Hot coffee beckons with its promise of contraband comfort on a cold and busy Monday morning. Ms. H, my first patient, has not arrived yet. I consider a quick dash downstairs to the coffee shop. I can usually make it back in 4 minutes.… I glance at my email. You have 2 new PatientSite messages. I stay.
I close the many open windows on my computer and open the link. I approach the blinking vigil of the messages as I might a covered wound—with a mix of curiosity, a desire to help, and a sense of impending doom. I feel two competing desires: to leave the bandage on or lift it off as quickly as possible. A subconscious triage occurs—do I have enough time, attention, and emotional energy to respond in this moment?
Little information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors’ office notes.
To evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet portals.
Quasi-experimental trial of PCPs and patient volunteers in a year-long program that provided patients with electronic links to their doctors’ notes.