Tackling Ambulatory Safety Risks Through Patient Engagement: What 10,000 Patients and Families Say About Safety-Related Knowledge, Behaviors, and Attitudes After Reading Visit Notes.

BACKGROUND: Ambulatory safety risks including delayed diagnoses or missed abnormal test results are difficult for clinicians to see, because they often occur in the space between visits. Experts advocate greater patient engagement to improve safety, but strategies are limited. Patient access to clinical notes ("OpenNotes") may help close the safety gap between visits. METHODS: We surveyed patients and families who logged on to the patient portal and had at least one ambulatory note available in the past 12 months at two academic hospitals during June to September 2016, focusing on patient-reported effects of OpenNotes on safety knowledge, behaviors, and attitudes. RESULTS: A total of 6913 (28%) of 24,722 patients at an adult hospital and 3672 (17%) of 21,579 participants at the children's hospital submitted surveys. Approximately 75% of patients and parents each reported that reading notes helped them understand the reason for both tests and referrals, and approximately 50% felt that it helped them complete tests and referrals. Roughly 75% of participants were more likely to check and understand test results. Overall, 97% of participants reported that trust in the provider, activation, patient-provider goal alignment, and teamwork were each better or the same after reading 1 note or more. Nonwhite participants and those with high school education or less were 30% to 50% more likely to report that reading notes helped them complete tests compared with white and more educated respondents, respectively. CONCLUSIONS: Overall, the majority of more than 10,000 patients and parents reported reading notes helped them understand and follow through on tests and referrals. As information transparency spreads, OpenNotes can help activate patients and families, facilitate safety behaviors, and forge stronger partnerships with clinicians.

Correction: OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians' Outpatient Visit Notes.

[This corrects the article DOI: 10.2196/13876.].

A patient and family reporting system for perceived ambulatory note mistakes: experience at 3 U.S. healthcare centers.

OBJECTIVE: The study sought to test a patient and family online reporting system for perceived ambulatory visit note inaccuracies. MATERIALS AND METHODS: We implemented a patient and family electronic reporting system at 3 U.S. healthcare centers: a northeast urban academic adult medical center (AD), a northeast urban academic pediatric medical center (PED), and a southeast nonprofit hospital network (NET). Patients and families reported potential documentation inaccuracies after reading primary care and subspecialty visit notes. Results were characterized using descriptive statistics and coded for clinical relevance. RESULTS: We received 1440 patient and family reports (780 AD, 402 PED, and 258 NET), and 27% of the reports identified a potential inaccuracy (25% AD, 35% PED, 28% NET). Among these, patients and families indicated that the potential inaccuracy was important or very important in 58% of reports (55% AD, 55% PED, 71% NET). The most common types of potential inaccuracies included description of symptoms (21%), past medical problems (21%), medications (18%), and important information that was missing (15%). Most patient- and family-reported inaccuracies resulted in a change to care or to the medical record (55% AD, 67% PED, data not available at NET). DISCUSSION: About one-quarter of patients and families using an online reporting system identified potential documentation inaccuracies in visit notes and more than half were considered important by patients and clinicians, underscoring the potential role of patients and families as ambulatory safety partners. CONCLUSIONS: Partnering with patients and families to obtain reports on inaccuracies in visit notes may contribute to safer care. Mechanisms to encourage greater use of patient and family reporting systems are needed.

OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians' Outpatient Visit Notes.

BACKGROUND: Following a 2010-2011 pilot intervention in which a limited sample of primary care doctors offered their patients secure Web-based portal access to their office visit notes, the participating sites expanded OpenNotes to nearly all clinicians in primary care, medical, and surgical specialty practices. OBJECTIVE: The aim of this study was to examine the ongoing experiences and perceptions of patients who read ambulatory visit notes written by a broad range of doctors, nurses, and other clinicians. METHODS: A total of 3 large US health systems in Boston, Seattle, and rural Pennsylvania conducted a Web-based survey of adult patients who used portal accounts and had at least 1 visit note available in a recent 12-month period. The main outcome measures included patient-reported behaviors and their perceptions concerning benefits versus risks. RESULTS: Among 136,815 patients who received invitations, 21.68% (29,656/136,815) responded. Of the 28,782 patient respondents, 62.82% (18,081/28,782) were female, 72.90% (20,982/28,782) were aged 45 years or older, 76.94% (22,146/28,782) were white, and 14.30% (4115/28,782) reported fair or poor health. Among the 22,947 who reported reading 1 or more notes, 3 out of 4 reported reading them for 1 year or longer, half reported reading at least 4 notes, and 37.74% (8588/22,753) shared a note with someone else. Patients rated note reading as very important for helping take care of their health (16,354/22,520, 72.62%), feeling in control of their care (15,726/22,515, 69.85%), and remembering the plan of care (14,821/22,516, 65.82%). Few were very confused (737/22,304, 3.3%) or more worried (1078/22,303, 4.83%) after reading notes. About a third reported being encouraged by their clinicians to read notes and a third told their clinicians they had read them. Less educated, nonwhite, older, and Hispanic patients, and individuals who usually did not speak English at home, were those most likely to report major benefits from note reading. Nearly all respondents (22,593/22,947, 98.46%) thought Web-based access to visit notes a good idea, and 62.38% (13,427/21,525) rated this practice as very important for choosing a future provider. CONCLUSIONS: In this first large-scale survey of patient experiences with a broad range of clinicians working in practices in which shared notes are well established, patients find note reading very important for their health management and share their notes frequently with others. Patients are rarely troubled by what they read, and those traditionally underserved in the United States report particular benefit. However, fewer than half of clinicians and patients actively address their shared notes during visits. As the practice continues to spread rapidly in the United States and internationally, our findings indicate that OpenNotes brings benefits to patients that largely outweigh the risks.

The Importance of Visit Notes on Patient Portals for Engaging Less Educated or Nonwhite Patients: Survey Study.

BACKGROUND: OpenNotes, a national initiative to share clinicians' visit notes with patients, can improve patient engagement, but effects on vulnerable populations are not known very well. OBJECTIVE: Our aim is to examine the importance of visit notes to nonwhite and less educated patients. METHODS: Patients at an urban academic medical center with an active patient portal account and ≥1 available ambulatory visit note over the prior year were surveyed during June 2016 until September 2016. The survey was designed with patients and families and assessed importance of reading notes (scale 0-10) for (1) understanding health conditions, (2) feeling informed about care, (3) understanding the provider's thought process, (4) remembering the plan of care, and (5) making decisions about care. We compared the proportion of patients reporting 9-10 (extremely important) for each item stratified by education level, race/ethnicity, and self-reported health. Principal component analysis and correlation measures supported a summary score for the 5 items (Cronbach alpha=.93). We examined factors associated with rating notes as extremely important to engage in care using logistic regression. RESULTS: Of 24,722 patients, 6913 (27.96%) completed the survey. The majority (6736/6913, 97.44%) read at least one note. Among note readers, 74.0% (727/982) of patients with ≤high school education, 70.7% (130/184) of black patients, and 69.9% (153/219) of Hispanic/Latino patients reported that notes are extremely important to feel informed about their care. The majority of less educated and nonwhite patients reported notes as extremely important to remember the care plan (62.4%, 613/982 ≤high school education; 62.0%, 114/184 black patients; and 61.6%, 135/219 Hispanic/Latino patients) and to make care decisions (62.3%, 612/982; 59.8%, 110/184; and 58.5%, 128/219, respectively, and P<.003 for all comparisons to more educated and white patients, respectively). Among patients with the poorest self-reported health, 65.9% (499/757) found notes extremely important to be informed and to understand the provider. On multivariable modeling, less educated patients were nearly three times as likely to report notes were extremely important to engage in care compared with the most educated patients (odds ratio [OR] 2.9, 95% CI 2.4-3.3). Nonwhite patients were twice as likely to report the same compared with white patients (OR 2.0, 95% CI 1.5-2.7 [black] and OR 2.2, 95% CI 1.6-2.9 [Hispanic/Latino and Asian], P<.001 for each comparison). Healthier patients, women, older patients, and those who read more notes were more likely to find notes extremely important to engage in care. CONCLUSIONS: Less educated and nonwhite patients using the portal each assigned higher importance to reading notes for several health behaviors than highly educated and white patients, and may find transparent notes especially valuable for understanding their health and engaging in their care. Facilitating access to notes may improve engagement in health care for some vulnerable populations who have historically been more challenging to reach.

Empowering Informal Caregivers with Health Information: OpenNotes as a Safety Strategy.

BACKGROUND: Enabling family/friend caregivers with access to visit notes may help avoid errors, delayed diagnoses, or other ambulatory safety risks. Patient, parent, and caregiver perceptions of how shared notes affect safety behaviors and attitudes were studied in an exploratory study. METHODS: To assess the impact of OpenNotes on safety, 24,722 patients with active portal accounts and ≥ 1 available visit notes during the prior year at an urban hospital were surveyed between June and September 2016. Surveys were sent to patient portal accounts, and respondents designated themselves as patients or caregivers. Although the hospital does not have formal proxy portal registration, some patients share access with their caregivers. RESULTS: Of 24,722 portal accounts accessed during the study, 7,058 (28.5%) surveys were returned, with 150 (2.1%) participants identified as caregivers. Among patients who had tests and referrals, reading notes helped caregivers understand the reason for the test (96/120 [80.0%]) or referral (48/52 [92.3%]), remember to get patient tests done (66/120 [55.0%]), check (98/120 [81.7%]) and understand (98/120 [81.7%]) results, and remember patient appointments (36/52 [69.2%]). As a result of reading notes, 54.1% (59/109) of caregivers helping patients on prescription medications reported better assisting patients to take them correctly. Among note-reading caregivers, 53.7% (n = 72/134) trusted the clinician more (44.8% no change), and 58.2% (n = 78/134) reported better teamwork (41.0% no change) as a result of open notes. In total, 30.3% (n = 40/132) reported at least one mistake or possible mistake in the patient's notes. Finding a possible mistake did not negatively affect trust or teamwork. CONCLUSION: OpenNotes may enable caregivers with patient health information, answering the call to better support this critical group in the health care system and to engage patients and families in safety efforts.

What Patients Value About Reading Visit Notes: A Qualitative Inquiry of Patient Experiences With Their Health Information.

BACKGROUND: Patients are increasingly asking for their health data. Yet, little is known about what motivates patients to engage with the electronic health record (EHR). Furthermore, quality-focused mechanisms for patients to comment about their records are lacking. OBJECTIVE: We aimed to learn more about patient experiences with reading and providing feedback on their visit notes. METHODS: We developed a patient feedback tool linked to OpenNotes as part of a pilot quality improvement initiative focused on patient engagement. Patients who had appointments with members of 2 primary care teams piloting the program between August 2014-2015 were eligible to participate. We asked patients what they liked about reading notes and about using a feedback tool and analyzed all patient reports submitted during the pilot period. Two researchers coded the qualitative responses (κ=.74). RESULTS: Patients and care partners submitted 260 reports. Among these, 98.5% (256/260) of reports indicated that the reporting tool was valuable, and 68.8% (179/260) highlighted what patients liked about reading notes and the OpenNotes patient reporting tool process. We identified 4 themes describing what patients value about note content: confirm and remember next steps, quicker access and results, positive emotions, and sharing information with care partners; and 4 themes about both patients' use of notes and the feedback tool: accuracy and correcting mistakes, partnership and engagement, bidirectional communication and enhanced education, and importance of feedback. CONCLUSIONS: Patients and care partners who read notes and submitted feedback reported greater engagement and the desire to help clinicians improve note accuracy. Aspects of what patients like about using both notes as well as a feedback tool highlight personal, relational, and safety benefits. Future efforts to engage patients through the EHR may be guided by what patients value, offering opportunities to strengthen care partnerships between patients and clinicians.

A patient feedback reporting tool for OpenNotes: implications for patient-clinician safety and quality partnerships.

BACKGROUND: OpenNotes, a national movement inviting patients to read their clinicians' notes online, may enhance safety through patient-reported documentation errors. OBJECTIVE: To test an OpenNotes patient reporting tool focused on safety concerns. METHODS: We invited 6225 patients through a patient portal to provide note feedback in a quality improvement pilot between August 2014 and 2015. A link at the end of the note led to a 9-question survey. Patient Relations personnel vetted responses, shared safety concerns with providers and documented whether changes were made. RESULTS: 2736/6225(44%) of patients read notes; among these, 1 in 12 patients used the tool, submitting 260 reports. Nearly all (96%) respondents reported understanding the note. Patients and care partners documented potential safety concerns in 23% of reports; 2% did not understand the care plan and 21% reported possible mistakes, including medications, existing health problems, something important missing from the note or current symptoms. Among these, 64% were definite or possible safety concerns on clinician review, and 57% of cases confirmed with patients resulted in a change to the record or care. The feedback tool exceeded the reporting rate of our ambulatory online clinician adverse event reporting system several-fold. After a year, 99% of patients and care partners found the tool valuable, 97% wanted it to continue, 98% reported unchanged or improved relationships with their clinician, and none of the providers in the small pilot reported worsening workflow or relationships with patients. CONCLUSIONS: Patients and care partners reported potential safety concerns in about one-quarter of reports, often resulting in a change to the record or care. Early data from an OpenNotes patient reporting tool may help engage patients as safety partners without apparent negative consequences for clinician workflow or patient-clinician relationships.

Oral Health Disparities and Unmet Dental Needs among Preschool Children in Chelsea, MA: Exploring Mechanisms, Defining Solutions.

BACKGROUND: Significant disparities exist in children's receipt of preventive dental care (PDC) in the United States. Many of the children at greatest risk of dental disease do not receive timely PDC; when they do receive dental care, it is often more for relief of dental pain. Chelsea is a low-income, diverse Massachusetts community with high rates of untreated childhood caries. There are various dental resources available in Chelsea, yet many children do not access dental care at levels equivalent to their needs. OBJECTIVE: Using Chelsea as a case-study, to explore factors contributing to forgone PDC (including the age 1 dental visit) in an in-depth way. METHODS: We used a qualitative study design that included semi-structured interviews with parents of preschool children residing in Chelsea, and Chelsea-based providers including pediatricians, dentists, a dental hygienist and early childhood care providers. We examined: a) parents' dental attitudes and oral health cultural beliefs; b) parents' and providers' perspectives on facilitators and barriers to PDC, reasons for unmet needs, and proposed solutions to address the problem. We recorded, transcribed and independently coded all interviews. Using rigorous, iterative qualitative data analyses procedures, we identified emergent themes. RESULTS: Factors perceived to facilitate receipt of PDC included Head-Start oral health policies, strong pediatric primary care/dental linkages, community outreach and advertising, and parents' own oral health experiences. Most parents and providers perceived there to be an adequate number of accessible dental services and resources in Chelsea, including for Medicaid enrollees. However, several barriers impeded children from receiving timely PDC, the most frequently cited being insurance related problems for children and adults. Other barriers included limited dental services for children <2 years, perceived poor quality of some dental practices, lack of emphasis on prevention-based dental care, poor care-coordination, and insufficient culturally-appropriate care. Important family-level barriers included parental oral health literacy, cultural factors, limited English proficiency and competing priorities. Several solutions were proposed to address identified barriers. CONCLUSION: Even in a community with a considerable number of dental resources, various factors may preclude access to these services by preschool-aged children. Opportunities exist to address modifiable factors through strategic oral health policies, community outreach and improved care coordination between physicians, dentists and early childhood care providers.