We congratulate Martin 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, 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 initiative 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.
Editorial / Commentary
Dermatology in an Age of Fully Transparent Electronic Medical Records
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
US experience with doctors and patients sharing clinical notes
The move to offer patients online access to their clinicians’ notes is accelerating and holds promise of supporting more truly collaborative relationships between patients and clinicians, say Jan Walker, Michael Meltsner, and Tom Delbanco
For decades clinicians have experimented with making medical records available to patients.1 2 3 4 5 6 Now electronic medical records and associated secure internet portals provide patients the opportunity to view test results, medications, and other selected parts of the medical record on line.7 But few patients are offered full access to their records; clinicians’ notes are rarely visible. After a demonstration project showed the acceptability of OpenNotes (www.myopennotes.org) in the US,8 several prominent healthcare providers decided to make clinicians’ notes available to patients online before further formal evaluation. We describe the OpenNotes movement in the US and how sharing notes with patients is spreading. We also underline the case for research to assess the long term effect of sharing notes and the potential to foster improved and truly collaborative care.
The “Open Letter”: Radiologists’ Reports in the Era of Patient Web Portals
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.
Let’s Show Patients Their Mental Health Records
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.
The Road toward Fully Transparent Medical Records
Patients who were given access to their physicians’ notes reported having better recall and understanding of their care plans, feeling more in control of their health care, and adhering better to medication regimens. Doctors reported little effect on their work lives.
Consumers Gaining Ground in Health Care
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.
Interval Examination: Moving Toward Open Notes
Despite periodic efforts over almost 5 decades, the idea of having patients review and contribute to their medical records has failed to take hold, even though such practice might engage patients more actively in maintaining their health and managing their care and might also improve quality of care and patient safety. Contemporary trends toward increased transparency, accompanied by evolving health information technologies, provided an opportunity for us to conduct a study examining the effects on both patients and primary care physicians (PCPs) of inviting patients to read their doctors’ visit notes. Bolstered by encouraging findings from this study, and with the goal of informing those who might join in further inquiry, we outline in this “interval examination” challenges we are encountering and strategies we are employing as we explore wider implementation of this practice.
The essence of morning
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?
The first email is from Diana and it dispels the fog of distracted multitasking. I hear her voice as I read: “Doctora, ¿Como esta? Y la familia…?” She continues, in Spanish: “Thanks for seeing me on Friday. I read your office note. The fever is gone and I am feeling better. Can you schedule the PET scan sooner? Also, when you have a momentico, can you give me a call? I want to ask you about some of the blood tests. Affectionately, Diana.”
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