Patients have unprecedented online access to their medical records. More than 6 million Americans can now read their doctors’ notes via patient portals, and continued rapid growth is likely. Sharing notes with patients may yield important health benefits, including increased patient empowerment and improved medication adherence. Seeing written information, including notes, helps patients remember the plan of care, reinforces patients’ positive behaviors, and strengthens the patient–doctor alliance.
Millions of patients are accessing their medical records online via secure electronic patient portals. They are also increasingly uploading data directly into their records, and many clinicians now offer patients ready and ongoing access to the notes that document encounters. In response, patients report improved understanding of their care, better recall, enhanced adherence to care plans, and an increased sense of control over their health.
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.
Historically, radiologists’ official written reports have functionally been proprietary communications between radiologists and referring providers. Although never secret, these reports have traditionally been archived in the medical record, with tightly controlled access. Patients rarely viewed reports directly. As patient-centered care, transparent communication, and electronic archiving have converged, however, radiologists’ reports, like many other medical record components, are increasingly accessible to patients via web-based “portals.” Many radiologists harbor justified anxiety about whether and how radiology reports should change in response to these portals.
Should we health professionals encourage patients with mental illness to read their medical record notes? As electronic medical records and secure online portals proliferate, patients are gaining ready access not only to laboratory findings but also to clinicians’ notes. Primary care patients report that reading their doctors’ notes brings many benefits including greater control over their health care, and their doctors experience surprisingly few changes in workflow. While patients worry about electronic records and potential loss of privacy, they vote resoundingly for making their records more available to them and often to their families.
At long last public and private initiatives are on the verge of giving consumers more information and more fair opportunities when it comes to obtaining health insurance and health care, reducing the uneven care and dysfunctional financing that have long plagued the health care system in the United States.
The Affordable Care Act (ACA) is recasting the marketplace for health insurance, allowing consumers who shop on their own to make more informed choices among a better selection of health plans. Health insurers must now play by a different set of rules. Consumers with preexisting conditions are no longer denied insurance. The products for sale are more standardized, and important loopholes such as misleading out-of-pocket maximums have been closed. Private plans can be compared on an apples-to-apples basis using a new Summary of Benefits and Coverage form that standardizes the way coverage is described no matter which company or organization is offering it.
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?