Roanne Mejilla

Online access to doctors' notes: patient concerns about privacy.

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. Methods The 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. Results 32.91% 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. Conclusions When 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.

Engaging patients through open notes: an evaluation using mixed methods

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. Design Mixed 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. Setting Greater Boston, USA. Participants Patients 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. Results Patient 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. Conclusions As 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 physicians 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.

Patients who share transparent visit notes with others: characteristics, risks, and benefits.

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. Results More 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. Conclusions One 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.

When doctors share visit notes with patients: a study of patient and doctor perceptions of documentation errors, safety opportunities and the patient–doctor relationship

Background Patient advocates and safety experts encourage adoption of transparent health records, but sceptics worry that shared notes may offend patients, erode trust or promote defensive medicine. As electronic health records disseminate, such disparate views fuel policy debates about risks and benefits of sharing visit notes with patients through portals. Methods Presurveys and postsurveys from 99 volunteer doctors at three US sites who participated in OpenNotes and postsurveys from 4592 patients who read at least one note and submitted a survey. Results Patients read notes to be better informed and because they were curious; about a third read them to check accuracy. In total, 7% (331) of patients reported contacting their doctors office about their note. Of these, 29% perceived an error, and 85% were satisfied with its resolution. Nearly all patients reported feeling better (37%) or the same (62%) about their doctor. Patients who were older (>63), male, non-white, had fair/poor self-reported health or had less formal education were more likely to report feeling better about their doctor. Among doctors, 26% anticipated documentation errors, and 44% thought patients would disagree with notes. After a year, 53% believed patient satisfaction increased, and 51% thought patients trusted them more. None reported ordering more tests or referrals. Conclusions 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.

Do Patients Who Access Clinical Information on Patient Internet Portals Have More Primary Care Visits

Background:As health care costs alarm the nation and the debate increases about the impact of health information technologies, patients are reviewing their medical records increasingly through secure Internet portals. Important questions remain about the impact of portal use on office visits. Objective:To evaluate whether use of patient Internet portals to access records is associated with increased primary care utilization. Research Design:A prospective cohort study. Subjects:Primary care patients registered on patient Internet portals, within an integrated health system serving rural Pennsylvania and an academic medical center in Boston. Measures:Frequency of “clinical portal use” (days/2 mo intervals over 2 y) included secure messaging about clinical issues and viewing laboratory and radiology findings. In year 2, a subset of patients also gained access to their primary care doctor’s visit notes. The main outcome was number of primary care office visits. Results:In the first 2 months of the 2-year period, 14% of 44,951 primary care patients engaged in clinical portal use 2 or more days per month, 31% did so 1 day per month, and the remainder had no clinical portal use. Overall, adjusted for age, sex, and chronic conditions, clinical portal use was not associated with subsequent office visits. Fewer than 0.1% of patients engaged in high levels of clinical portal use (31 or more login days in 2 mo) that were associated with 1 or more additional visits in the subsequent 2 months (months 3 and 4). However, the reverse was true: office visits led to subsequent clinical portal use. Similar trends were observed among patients with or without access to visit notes. Conclusions:Patients turn to their portals following visits, but clinical portal use does not contribute to an increase in primary care visits.

Opening Residents' Notes to Patients: A Qualitative Study of Resident and Faculty Physician Attitudes on Open Notes Implementation in Graduate Medical Education.

Purpose OpenNotes is a growing national initiative inviting patients to read clinician progress notes (open notes) through a secure electronic portal. The goals of this study were to (1) identify resident and faculty preceptor attitudes about sharing notes with patients, and (2) assess specific educational needs, policy recommendations, and approaches to facilitate open notes implementation. Method This was a qualitative study using focus groups with residents and faculty physicians who supervise residents, representing primary care, general surgery, surgical and procedural specialties, and nonprocedural specialties, from Beth Israel Deaconess Medical Center and Geisinger Health System in spring 2013. Data were audio recorded and transcribed verbatim, then coded and organized into themes. Results Thirty-six clinicians (24 [66.7%] residents and 12 [33.3%] faculty physicians) participated. Four main themes emerged: (1) implications of full transparency, (2) note audiences and ideology, (3) trust between patients and doctors, and (4) time pressures. Residents and faculty discussed how open notes might yield more engaged patients and better notes but were concerned about the time needed to edit notes and respond to patient inquiries. Residents were uncertain how much detail they should share with patients and were concerned about the potential to harm the patient–doctor relationship. Residents and faculty offered several recommendations for open notes implementation. Conclusions Overall, participants were ambivalent about resident participation in open notes. Residents and faculty identified clinical and educational benefits to open notes but were concerned about potential effects on the patient–doctor relationship, requirements for oversight, and increased workload and burnout.

Patient Access to Online Visit Notes: Perceptions of Doctors and Patients at an Urban HIV/AIDS Clinic

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.