Inviting Patients to Read Their Doctors' Notes: Patients and Doctors Look Ahead

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. SETTING: Primary care practices in 3 U.S. states. PARTICIPANTS: Participating and nonparticipating PCPs and adult patients at primary care practices in Massachusetts, Pennsylvania, and Washington. MEASUREMENTS: Doctors' and patients' attitudes toward and expectations of open visit notes, their ideas about the potential benefits and risks, and demographic characteristics. RESULTS: 110 of 114 participating PCPs (96%), 63 of 140 nonparticipating PCPs (45%), and 37 856 of 90 203 patients (42%) completed surveys. Overall, 69% to 81% of participating PCPs across the 3 sites and 92% to 97% of patients thought open visit notes were a good idea, compared with 16% to 33% of nonparticipating PCPs. Similarly, participating PCPs and patients generally agreed with statements about potential benefits of open visit notes, whereas nonparticipating PCPs were less likely to agree. Among participating PCPs, 74% to 92% anticipated improved communication and patient education, in contrast to 45% to 67% of nonparticipating PCPs. More than one half of participating PCPs (50% to 58%) and most nonparticipating PCPs (88% to 92%) expected that open visit notes would result in greater worry among patients; far fewer patients concurred (12% to 16%). Thirty-six percent to 50% of participating PCPs and 83% to 84% of nonparticipating PCPs anticipated more patient questions between visits. Few PCPs (0% to 33%) anticipated increased risk for lawsuits. Patient enthusiasm extended across age, education, and health status, and 22% anticipated sharing visit notes with others, including other doctors. LIMITATIONS: Access to electronic patient portals is not widespread, and participation was limited to patients using such portals. Response rates were higher among participating PCPs than nonparticipating PCPs; many participating PCPs had small patient panels. CONCLUSION: Among PCPs, opinions about open visit notes varied widely in terms of predicting the effect on their practices and benefits for patients. In contrast, patients expressed considerable enthusiasm and few fears, anticipating both improved understanding and more involvement in care. Sharing visit notes has broad implications for quality of care, privacy, and shared accountability. PRIMARY FUNDING SOURCE: The Robert Wood Johnson Foundation's Pioneer Portfolio, Drane Family Fund, and Koplow Charitable Foundation.