Tom Delbanco

Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead

BACKGROUNDnLittle information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors office notes.nnnOBJECTIVEnTo evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet portals.nnnDESIGNnQuasi-experimental trial of PCPs and patient volunteers in a year-long program that provided patients with electronic links to their doctors notes.nnnSETTINGnPrimary care practices at Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington.nnnPARTICIPANTSn105 PCPs and 13,564 of their patients who had at least 1 completed note available during the intervention period.nnnMEASUREMENTSnPortal use and electronic messaging by patients and surveys focusing on participants perceptions of behaviors, benefits, and negative consequences.nnnRESULTSn11,155 [corrected] of 13,564 patients with visit notes available opened at least 1 note (84% at BIDMC, 82% [corrected] at GHS, and 47% at HMC). Of 5219 [corrected] patients who opened at least 1 note and completed a postintervention survey, 77% to 59% [corrected] 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 doctors 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.nnnLIMITATIONSnOnly 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.nnnCONCLUSIONnPatients 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.nnnPRIMARY FUNDING SOURCEnThe Robert Wood Johnson Foundation, the Drane Family Fund, the Richard and Florence Koplow Charitable Foundation, and the National Cancer Institute.

Promoting patient-centered care: a qualitative study of facilitators and barriers in healthcare organizations with a reputation for improving the patient experience

OBJECTIVEnTo investigate organizational facilitators and barriers to patient-centered care in US health care institutions renowned for improving the patient care experience.nnnDESIGNnA qualitative study involving interviews of senior staff and patient representatives. Semi-structured interviews focused on organizational processes, senior leadership, work environment, measurement and feedback mechanisms, patient engagement and information technology and access.nnnSETTINGnEight health care organizations across the USA with a reputation for successfully promoting patient-centered care.nnnPARTICIPANTSnForty individuals, including chief executives, quality directors, chief medical officers, administrative directors and patient committee representatives.nnnRESULTSnInterviewees reported that several organizational attributes and processes are key facilitators for making care more patient-centered: (i) strong, committed senior leadership, (ii) clear communication of strategic vision, (iii) active engagement of patient and families throughout the institution, (iv) sustained focus on staff satisfaction, (v) active measurement and feedback reporting of patient experiences, (vi) adequate resourcing of care delivery redesign, (vii) staff capacity building, (viii) accountability and incentives and (ix) a culture strongly supportive of change and learning. Interviewees reported that changing the organizational culture from a provider-focus to a patient-focus and the length of time it took to transition toward such a focus were the principal barriers against transforming delivery for patient-centered care.nnnCONCLUSIONSnOrganizations that have succeeded in fostering patient-centered care have gone beyond mainstream frameworks for quality improvement based on clinical measurement and audit and have adopted a strategic organizational approach to patient focus.

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.

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

BACKGROUNDnLittle is known about what primary care physicians (PCPs) and patients would expect if patients were invited to read their doctors office notes.nnnOBJECTIVEnTo explore attitudes toward potential benefits or harms if PCPs offered patients ready access to visit notes.nnnDESIGNnThe PCPs and patients completed surveys before joining a voluntary program that provided electronic links to doctors notes.nnnSETTINGnPrimary care practices in 3 U.S. states.nnnPARTICIPANTSnParticipating and nonparticipating PCPs and adult patients at primary care practices in Massachusetts, Pennsylvania, and Washington.nnnMEASUREMENTSnDoctors and patients attitudes toward and expectations of open visit notes, their ideas about the potential benefits and risks, and demographic characteristics.nnnRESULTSn110 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.nnnLIMITATIONSnAccess 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.nnnCONCLUSIONnAmong 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.nnnPRIMARY FUNDING SOURCEnThe Robert Wood Johnson Foundations Pioneer Portfolio, Drane Family Fund, and Koplow Charitable Foundation.

Healthcare in a land called PeoplePower: nothing about me without me

In a 5‐day retreat at a Salzburg Seminar attended by 64 individuals from 29 countries, teams of health professionals, patient advocates, artists, reporters and social scientists adopted the guiding principle of ‘nothing about me without me’ and created the country of PeoplePower. Designed to shift health care from ‘biomedicine’ to ‘infomedicine’, patients and health workers throughout PeoplePower join in informed, shared decision‐making and governance. Drawing, where possible, on computer‐based guidance and communication technologies, patients and clinicians contribute actively to the patient record, transcripts of clinical encounters are shared, and patient education occurs primarily in the home, school and community‐based organizations. Patients and clinicians jointly develop individual ‘quality contracts’, serving as building blocks for quality measurement and improvement systems that aggregate data, while reflecting unique attributes of individual patients and clinicians. Patients donate process and outcome data to national data banks that fuel epidemiological research and evidence‐based improvement systems. In PeoplePower hospitals, constant patient and employee feedback informs quality improvement work teams of patients and health professionals. Volunteers work actively in all units, patient rooms are information centres that transform their shape and decor as needs and individual preferences dictate, and arts and humanities programmes nourish the spirit. In the community, from the earliest school days the citizenry works with health professionals to adopt responsible health behaviours. Communities join in selecting and educating health professionals and barter systems improve access to care. Finally, lay individuals partner with professionals on all local, regional and national governmental and private health agencies.

Improving the patient, family, and clinician experience after harmful events: the "when things go wrong" curriculum.

The emotional toll of medical error is high for both patients and clinicians, who are often unsure with whom-and whether-they can discuss what happened. Although institutions are increasingly adopting full disclosure policies, trainees frequently do not disclose mistakes, and faculty physicians are underprepared to teach communication skills related to disclosure and apology. The authors developed an interactive educational program for trainees and faculty physicians that assesses experiences, attitudes, and perceptions about error, explores the human impact of error through filmed patient and family narratives, develops communication skills, and offers a strategy to facilitate bedside disclosures. Between spring 2007 and fall 2008, 154 trainees (medical students/residents) and 75 medical educators completed the program. Among learners surveyed, 62% of trainees and 88% of faculty physicians reported making medical mistakes. Of those, 62% and 78%, respectively, reported they did not apologize. While 65% of trainees said they would turn to senior doctors for assistance after an error, 26% were not sure where to get help. Just 20% of trainees and 21% of physicians reported adequate training to respond to error. Following the session, all of the faculty physicians surveyed indicated they felt better prepared to address and teach this topic. At a time of increased attention to disclosure, actual faculty and trainee practices suggest that role models, support systems, and education strategies are lacking. Trainees widespread experience with error highlights the need for a disclosure curriculum early in medical education. Educational initiatives focusing on communication after harm should target teachers and students.

The Road toward Fully Transparent Medical Records

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.

Evaluating the impact of patients' online access to doctors' visit notes: designing and executing the OpenNotes project

BackgroundProviders 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.Methods/DesignUsing a mixed methods approach, we designed a quasi-experimental study in 3 diverse healthcare systems in Boston, Pennsylvania, and Seattle. Two sites had existing patient internet portals; the third used an experimental portal. We targeted 3 key areas where we hypothesized the greatest impacts: beliefs and attitudes about OpenNotes, use of the patient internet portals, and patient-doctor communication. PCPs in the 3 sites were invited to participate in the intervention. Patients who were registered portal users of participating PCPs were given access to their PCPs visit notes for one year. PCPs who declined participation in the intervention and their patients served as the comparison groups for the study. We applied the RE-AIM framework to our design in order to capture as comprehensive a picture as possible of the impact of OpenNotes. We developed pre- and post-intervention surveys for online administration addressing attitudes and experiences based on interviews and focus groups with patients and doctors. In addition, we tracked use of the internet portals before and during the intervention.ResultsPCP participation varied from 19% to 87% across the 3 sites; a total of 114 PCPs enrolled in the intervention with their 22,000 patients who were registered portal users. Approximately 40% of intervention and non-intervention patients at the 3 sites responded to the online survey, yielding a total of approximately 38,000 patient surveys.DiscussionMany primary care physicians were willing to participate in this real world experiment testing the impact of OpenNotes on their patients and their practices. Results from this trial will inform providers, policy makers, and patients who contemplate such changes at a time of exploding interest in transparency, patient safety, and improving the quality of care.

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.

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