Patients living with HIV/AIDS face large societal and medical challenges. Inviting patients to read their doctors’ visit notes via secure electronic portals may empower patients and improve health. We investigated whether utilization and perceptions about access to doctors’ notes differed among doctors and patients in an HIV/AIDS clinic versus primary care setting. We analyzed pre- and 1-year postintervention data from 99 doctors and 3819 patients. HIV clinic patients did not report differences in perceived risks and benefits compared to primary care clinic patients, however, they were more likely to share notes with friends (33% versus 9%, P = .002), other health professionals (24% versus 8%, P = .03), or another doctor (38% versus 9%, P < .0001). HIV clinic doctors were less likely than primary care doctors to change the level of candor in visit notes (P < .04). Our findings suggest that HIV clinic patients and doctors are ready to share visit notes online.
Clinician Views/Experiences
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.
OpenNotes: Hospitalists’ challenge and opportunity
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.
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.”
Inviting Patients to Read Their Doctors’ Notes: Patients and Doctors Look Ahead: Patient and Physician Surveys
Background:
Little is known about what primary care physicians (PCPs) and patients would expect if patients were invited to read their doctors’ office notes.
Objective:
To explore attitudes toward potential benefits or harms if PCPs offered patients ready access to visit notes.
Design:
The PCPs and patients completed surveys before joining a voluntary program that provided electronic links to doctors’ notes.
Open Notes: Doctors and Patients Signing On
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.
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