As the OpenNotes movement spreads, it offers important opportunities to learn from many health care professionals and health systems, as well as millions of patients. We’re collaborating closely with researchers across the country and around the world to understand the effects of fully transparent medical care on communication, engagement, safety, costs, and the overall quality of care.
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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.
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.
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.
Forty years ago, Shenkin and Warner argued that giving patients their medical records “would lead to more appropriate utilization of physicians and a greater ability of patients to participate in their own care.”1 At that time, patients in most states could obtain their records only through litigation, but the rules gradually changed, and in 1996 the Health Insurance Portability and Accountability Act entitled virtually all patients to obtain their records on request. Today, we’re on the verge of eliminating such requests by simply providing patients online access. Thanks in part to federal financial incentives,2 electronic medical records are becoming the rule, accompanied increasingly by password-protected portals that offer patients laboratory, radiology, and pathology results and secure communication with their clinicians by e-mail.
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.
Background: Offering patients online access to medical records, including doctors’ visit notes, holds considerable potential to improve care. However, patients may worry about loss of privacy when accessing personal health information through Internet-based patient portals. The OpenNotes study provided patients at three US health care institutions with online access to their primary care doctors’ notes and then collected survey data about their experiences, including their concerns about privacy before and after participation in the intervention.
Objective: To identify patients’ attitudes toward privacy when given electronic access to their medical records, including visit notes.
At a time of societal fascination both with transparency and the explosion of health information technologies, a growing number of hospitals are offering, or will soon offer patients and their family instantaneous access to their doctors’ and nurses’ notes. What will this new opportunity for patient engagement mean for the hospitalist? Today, state and federal government regulations either encourage or require healthcare providers to grant patients access to their clinical information. But despite the rules embedded in the federal Health Insurance Portability and Accountability Act (HIPAA), patients often face time-consuming obstacles in their quest for access, and many providers view compliance as a burden.
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.