Background Little information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors’ office notes. Objective To evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet portals. Design Quasi-experimental trial of PCPs and patient volunteers in a year-long program that provided patients with electronic links to their doctors’ notes. Setting Primary care practices at Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington. Participants 105 PCPs and 13 564 of their patients who had at least 1 completed note available during the intervention period. Measurements Portal use and electronic messaging by patients and surveys focusing on participants’ perceptions of behaviors, benefits, and negative consequences. Results 11 797 of 13 564 patients with visit notes available opened at least 1 note (84% at BIDMC, 92% at GHS, and 47% at HMC). Of 5391 patients who opened at least 1 note and completed a postintervention survey, 77% to 87% across the 3 sites reported that open notes helped them feel more in control of their care; 60% to 78% of those taking medications reported increased medication adherence; 26% to 36% had privacy concerns; 1% to 8% reported that the notes caused confusion, worry, or offense; and 20% to 42% reported sharing notes with others. The volume of electronic messages from patients did not change. After the intervention, few doctors reported longer visits (0% to 5%) or more time addressing patients’ questions outside of visits (0% to 8%), with practice size having little effect; 3% to 36% of doctors reported changing documentation content; and 0% to 21% reported taking more time writing notes. Looking ahead, 59% to 62% of patients believed that they should be able to add comments to a doctor’s note. One out of 3 patients believed that they should be able to approve the notes’ contents, but 85% to 96% of doctors did not agree. At the end of the experimental period, 99% of patients wanted open notes to continue and no doctor elected to stop. Limitations Only 3 geographic areas were represented, and most participants were experienced in using portals. Doctors volunteering to participate and patients using portals and completing surveys may tend to offer favorable feedback, and the response rate of the patient surveys (41%) may further limit generalizability. Conclusion Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption. Primary Funding Source The Robert Wood Johnson Foundation, the Drane Family Fund, the Richard and Florence Koplow Charitable Foundation, and the National Cancer Institute.

Despite concerns about errors, offending language or defensive practice, transparent notes overall did not harm the patient-doctor relationship. Rather, doctors and patients perceived relational benefits. Traditionally more vulnerable populations-non-white, those with poorer self-reported health and those with fewer years of formal education-may be particularly likely to feel better about their doctor after reading their notes. Further informing debate about OpenNotes, the findings suggest transparent records may improve patient satisfaction, trust and safety.

Objectives(A) To gain insights into the experiences of patients invited to view their doctors’ visit notes, with a focus on those who review multiple notes; (B) to examine the relationships among fully transparent electronic medical records and quality of care, the patient-doctor relationship, patient engagement, self-care, self-management skills and clinical outcomes.DesignMixed methods qualitative study: analyses of survey data, including content analysis of free-text answers, and quantitative-descriptive measures combined with semistructured individual interviews, patient activation measures, and member checks.SettingGreater Boston, USA.ParticipantsPatients cared for by primary care physicians (PCPs) at the Beth Israel Deaconess Medical Center who had electronic access to their PCP visit notes. Among those submitting surveys, 576 free-text answers were identified and analysed (414 from female patients, 162 from male patients; 23–88 years). In addition, 13 patients (9 female, 4 male; 58–87 years) were interviewed.ResultsPatient experiences indicate improved understanding (of health information), better relationships (with doctors), better quality (adherence and compliance; keeping track) and improved self-care (patient-centredness, empowerment). Patients want more doctors to offer access to their notes, and some wish to contribute to their generation. Those patients with repeated experience reviewing notes express fewer concerns and more perceived benefits.ConclusionsAs the use of fully transparent medical records spreads, it is important to gain a deeper understanding of possible benefits or harms, and to characterise target populations that may require varying modes of delivery. Patient desires for expansion of this practice extend to specialty care and settings beyond the physician's office. Patients are also interested in becoming involved actively in the generation of their medical records. The OpenNotes movement may increase patient activation and engagement in important ways.

BackgroundVirtual world environments have the potential to increase access to diabetes self-management interventions and may lower cost.ObjectiveWe tested the feasibility and comparative effectiveness of a virtual world versus a face-to-face diabetes self-management group intervention.MethodsWe recruited African American women with type 2 diabetes to participate in an 8-week diabetes self-management program adapted from Power to Prevent, a behavior-change in-person group program for African Americans with diabetes or pre-diabetes. The program is social cognitive theory–guided, evidence-based, and culturally tailored. Participants were randomized to participate in the program via virtual world (Second Life) or face-to-face, both delivered by a single intervention team. Blinded assessors conducted in-person clinical (HbA1c), behavioral, and psychosocial measurements at baseline and 4-month follow-up. Pre-post differences within and between intervention groups were assessed using t tests and chi-square tests (two-sided and intention-to-treat analyses for all comparisons).ResultsParticipants (N=89) were an average of 52 years old (SD 10), 60% had ≤high school, 82% had household incomes

BackgroundOffering 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.ObjectiveTo identify patients’ attitudes toward privacy when given electronic access to their medical records, including visit notes.MethodsThe design used a nested cohort study of patients surveyed at baseline and after a 1-year period during which they were invited to read their visit notes through secure patient portals. Participants consisted of 3874 primary care patients from Beth Israel Deaconess Medical Center (Boston, MA), Geisinger Health System (Danville, PA), and Harborview Medical Center (Seattle, WA) who completed surveys before and after the OpenNotes intervention. The measures were patient-reported levels of concern regarding privacy associated with online access to visit notes.Results32.91% of patients (1275/3874 respondents) reported concerns about privacy at baseline versus 36.63% (1419/3874 respondents) post-intervention. Baseline concerns were associated with non-white race/ethnicity and lower confidence in communicating with doctors, but were not associated with choosing to read notes or desire for continued online access post-intervention (nearly all patients with notes available chose to read them and wanted continued access). While the level of concern among most participants did not change during the intervention, 15.54% (602/3874 respondents, excluding participants who responded “don’t know”) reported more concern post-intervention, and 12.73% (493/3874 respondents, excluding participants who responded “don’t know”) reported less concern.ConclusionsWhen considering online access to visit notes, approximately one-third of patients had concerns about privacy at baseline and post-intervention. These perceptions did not deter participants from accessing their notes, suggesting that the benefits of online access to medical records may outweigh patients’ perceived risks to privacy.

BackgroundInviting 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.ObjectiveOur 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.MethodsThe 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.ResultsMore than half (55.43%, 2503/4516) of the participants who reported viewing at least one visit note would like the option of letting family members or friends have their own Web access to their visit notes, and 21.70% (980/4516) reported sharing their visit notes with someone during the study year. Men, and those retired or unable to work, were significantly more likely to share visit notes, and those sharing were neither more nor less concerned about their privacy than were non-sharers. Compared to participants who did not share clinic notes, those who shared were more likely to report taking better care of themselves and taking their medications as prescribed, after adjustment for age, gender, employment status, and study site.ConclusionsOne in five OpenNotes patients shared a visit note with someone, and those sharing Web access to their visit notes reported better adherence to self-care and medications. As health information technology systems increase patients’ ability to access their medical records, facilitating access to caregivers may improve perceived health behaviors and outcomes.

Patients turn to their portals following visits, but clinical portal use does not contribute to an increase in primary care visits.

Note viewing persists when accompanied by email alerts, but may decline substantially in their absence. Non-white patients at BIDMC viewed notes less frequently than whites, although their interest also persisted.