The international movement pushing to increase transparency by giving patients easy access to their health information parallels a broader shift in healthcare towards increased patient empowerment and participation.
A new study from the OpenNotes project (1) suggests that giving patients access to their physicians’ visit notes may improve their understanding of and comfort with their medications, as well as adherence to medication regimens.
In this issue, an American College of Physicians (ACP) position paper on Principles for Patient and Family Partnership in Care moves beyond longstanding rhetoric urging clinicians to become more “patient-centered” and calls for an aggressive turn toward true partnership (1).
Patient and family engagement is gaining attention as a priority in patient care1 and medical education.2 OpenNotes, an innovation that invites patients to read their visit notes through a secure online portal, has demonstrated several health benefits.3 Over five million U.S. patients have online access to their notes today; shared visit notes may not only engage patients in care but also open the door to new educational innovations.
Intrigued by the idea of patient/family feedback on visit notes, our research team asked residents and their supervisors whether such feedback would be helpful.4 In surveys and focus groups, many agreed it would be.
As soon as the elevator door closed, the tears gave way, and I walked home with my head down … thoughts of my mistakes running rampant.
So began the reflection of a third-year medical student, who described falling short of his residents’ expectations on a history and physical examination. The crucial flaw? He had taken too long. His reflection continued:
[The next day], an elderly patient, traction stockings covering her small, dark brown legs, shuffled toward me. She stopped directly in front of me, her delicate, slightly stooped frame supported by her thin hand, grasping the IV pole. “Young man,” she said, “I heard you speaking to the patient in the bed next to me [last night]. And I just wanted you to know that I’m just so proud of you.… How you spoke to that patient with such care and intelligence. I’m just so proud.”
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.
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?