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.
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.
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.
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. We suggest an alternative view: Over time, we anticipate that inviting patients to review their medical record will reduce risk, increase knowledge, foster active engagement, and help them take more control of their care. The OpenNotes trial provides clues as to how such practice will affect both patients and providers (1, 2). We anticipate that transparent records will stimulate hospitalists, PCPs, and other caregivers to improve communication throughout the patient’s hospital stay. OpenNotes offers a special opportunity for improving the patient experience after leaving the hospital as well. Open notes will be viewed by many as a disruptive change, and the best strategy for adapting will be to move proactively to create policies that establish clear guidelines, for which the authors offer some suggestions.
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.
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.”
Electronic medical records and secure patient portals hold exciting potential for more active patient involvement in care and improved communication between patients and clinicians. These technologies facilitate a potentially disruptive innovation: Doctors can readily invite patients to read and share their visit notes and even contribute to the notes’ formulation. We conducted a quasi-experimental study, OpenNotes, in which more than 100 primary care physicians (PCPs) volunteered to invite more than 20 000 of their patients to review online the notes that the doctors wrote and signed after an office visit
Providers and policymakers are pursuing strategies to increase patient engagement in health care. Increasingly, online sections of medical records are viewable by patients though seldom are clinicians’ visit notes included. We designed a one-year multi-site trial of online patient accessible office visit notes, OpenNotes. We hypothesized that patients and primary care physicians (PCPs) would want it to continue and that OpenNotes would not lead to significant disruptions to doctors’ practices.
These days, commentary about bankers, politicians, or school systems is almost invariably accompanied by a call for “increased transparency.” And it’s not different for us in medicine. Spurred by electronic technologies, black boxes are being torn open right and left, bringing disruptive changes to both doctors and patients. We applaud these changes and argue that attendant benefits will far outweigh risks. And whether you agree or not, it’s probably futile to try to interfere with an unstoppable progression.
Few patients read their doctors’ notes, despite having the legal right to do so. As information technology makes medical records more accessible and society calls for greater transparency, patients’ interest in reading their doctors’ notes may increase. Inviting patients to review these notes could improve understanding of their health, foster productive communication, stimulate shared decision making, and ultimately lead to better outcomes. Yet, easy access to doctors’ notes could have negative consequences, such as confusing or worrying patients and complicating rather than improving patient–doctor communication. To gain evidence about the feasibility, benefits, and harms of providing patients ready access to electronic doctors’ notes, a team of physicians and nurses have embarked on a demonstration and evaluation of a project called OpenNotes. The authors describe the intervention and share what they learned from conversations with doctors and patients during the planning stages. The team anticipates that “open notes” will spread and suggests that over time, if drafted collaboratively and signed by both doctors and patients, they might evolve to become contracts for care.