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.
YPERTENSION IS ONE OF THE leading causes of death worldwide. 1 Almost 1 in 3 US adults has hypertension, defined as a sustained systolic and diastolic blood pressure (BP) of 140 and 90 mm Hg or higher, respectively. 2,3 Lowering BP with antihypertensive medications decreases mortality and major disability from cardiovascular and renal disease. Hypertension, however, remains inadequately treated in the majority of affected individuals. [4][5][6] In recent metaanalyses 7,8 of quality-improvement strategies to lower BP, those targeting patients (education and self-monitoring) or adding a health care team member, such as a nurse or a pharmacist, to focus specifically on hypertension had the largest reductions in BP. Optimal methods for integrating these strategies into routine care were less certain.Electronic medical records (EMRs) and secure patient Web sites increas-See also p 2896 and Patient Page.
BackgroundPatient portals have the potential to support self-management for chronic diseases and improve health outcomes. With the rapid rise in adoption of patient portals spurred by meaningful use incentives among safety net health systems (a health system or hospital providing a significant level of care to low-income, uninsured, and vulnerable populations), it is important to understand the readiness and willingness of patients and caregivers in safety net settings to access their personal health records online.ObjectiveTo explore patient and caregiver perspectives on online patient portal use before its implementation at San Francisco General Hospital, a safety net hospital.MethodsWe conducted 16 in-depth interviews with chronic disease patients and caregivers who expressed interest in using the Internet to manage their health. Discussions focused on health care experiences, technology use, and interest in using an online portal to manage health tasks. We used open coding to categorize all the barriers and facilitators to portal use, followed by a second round of coding that compared the categories to previously published findings. In secondary analyses, we also examined specific barriers among 2 subgroups: those with limited health literacy and caregivers.ResultsWe interviewed 11 patients and 5 caregivers. Patients were predominantly male (82%, 9/11) and African American (45%, 5/11). All patients had been diagnosed with diabetes and the majority had limited health literacy (73%, 8/11). The majority of caregivers were female (80%, 4/5), African American (60%, 3/5), caregivers of individuals with diabetes (60%, 3/5), and had adequate health literacy (60%, 3/5). A total of 88% (14/16) of participants reported interest in using the portal after viewing a prototype. Major perceived barriers included security concerns, lack of technical skills/interest, and preference for in-person communication. Facilitators to portal use included convenience, health monitoring, and improvements in patient-provider communication. Participants with limited health literacy discussed more fundamental barriers to portal use, including challenges with reading and typing, personal experience with online security breaches/viruses, and distrust of potential security measures. Caregivers expressed high interest in portal use to support their roles in interpreting health information, advocating for quality care, and managing health behaviors and medical care.ConclusionsDespite concerns about security, difficulty understanding medical information, and satisfaction with current communication processes, respondents generally expressed enthusiasm about portal use. Our findings suggest a strong need for training and support to assist vulnerable patients with portal registration and use, particularly those with limited health literacy. Efforts to encourage portal use among vulnerable patients should directly address health literacy and security/privacy issues and support access for caregivers.
OBJECTIVE—To test Web-based care management of glycemic control using a shared electronic medical record with patients who have type 2 diabetes. RESEARCH DESIGN AND METHODS—We conducted a trial of 83 adults with type 2 diabetes randomized to receive usual care plus Web-based care management or usual care alone between August 2002 and May 2004. All patients had GHb ≥7.0%, had Web access from home, and could use a computer with English language–based programs. Intervention patients received 12 months of Web-based care management. The Web-based program included patient access to electronic medical records, secure e-mail with providers, feedback on blood glucose readings, an educational Web site, and an interactive online diary for entering information about exercise, diet, and medication. The primary outcome was change in GHb. RESULTS—GHb levels declined by 0.7% (95% CI 0.2−1.3) on average among intervention patients compared with usual-care patients. Systolic blood pressure, diastolic blood pressure, total cholesterol levels, and use of in-person health care services did not differ between the two groups. CONCLUSIONS—Care management delivered through secure patient Web communications improved glycemic control in type 2 diabetes.
We describe here the design and initial implementation of the eMERGE-PGx project. eMERGE-PGx, a partnership of the eMERGE and PGRN consortia, has three objectives : 1) Deploy PGRNseq, a next-generation sequencing platform assessing sequence variation in 84 proposed pharmacogenes, in nearly 9,000 patients likely to be prescribed drugs of interest in a 1–3 year timeframe across several clinical sites; 2) Integrate well-established clinically-validated pharmacogenetic genotypes into the electronic health record with associated clinical decision support and assess process and clinical outcomes of implementation; and 3) Develop a repository of pharmacogenetic variants of unknown significance linked to a repository of EHR-based clinical phenotype data for ongoing pharmacogenomics discovery. We describe site-specific project implementation and anticipated products, including genetic variant and phenotype data repositories, novel variant association studies, clinical decision support modules, clinical and process outcomes, approaches to manage incidental findings, and patient and clinician education methods.
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.
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.
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 90 826 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.
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