People with diabetes who read their clinicians' visit notes: Behaviors and attitudes.

OBJECTIVES: To understand behaviors and attitudes of adults with diabetes who read their clinicians' visit notes. METHODS: By linking a large 2017 patient survey involving three institutions with administrative and portal use data, we identified patients with diabetes mellitus from outpatient records and examined reading behaviors related to eligible notes-initial, follow-up, history and physical, and progress notes. We analyzed patients' perceived benefits of reading notes. RESULTS: 2104 respondents had diagnoses of diabetes mellitus and had read ≥1 note in the 12-month period. Patients had an average of 8.7 eligible notes available and read 59% of them. The strongest predictor of reading more notes was having more notes available; the specialties of the authoring clinicians were not correlated with note reading rates. Patients reported understanding notes by primary care clinicians and specialists equally well; more than 90% of patients reported understanding everything or almost everything in a self-selected note. Across visit types, 73-80% of patients reported that note reading was extremely important for taking care of their health. DISCUSSION: People with diabetes want to read their clinicians' notes, are accessing them at high rates, and report understanding the notes and benefiting from reading them.

Educating the educators: Implementing cultural safety in the nursing and midwifery curriculum.

BACKGROUND: The Australian Nursing and Midwifery Accreditation Council mandates the teaching of cultural safety in Bachelor of Nursing and Midwifery programs in Australia. However nursing and midwifery academics may lack the awareness and knowledge required to share and develop cultural safety practices with their students. Specific cultural safety professional development for academics may be needed. OBJECTIVES: This research explores how nursing and midwifery academics at an Australian university understand cultural safety and whether they are equipped to embed it in the curriculum. It also examines whether professional development workshops can support academics to prepare for cultural safety. METHODS: An intervention involving three cultural safety professional development workshops was offered to nursing academics at an Australian university. The authors used qualitative surveys to consider whether the workshops deepened participants' understanding of cultural safety and developed the self-reflection required to embed cultural safety in teaching. RESULTS: The workshops contributed to participants' improved understandings of culture, colonisation, white privilege and the need for self-reflection, but not all participants developed a working knowledge of cultural safety practice. CONCLUSION: Professional development workshops can assist nursing and midwifery academics to develop their knowledge of cultural safety, but detailed, contextual understanding is likely to need more than three sessions. Academics' motivations to include cultural safety in their teaching may be linked to their desire for patient-driven and equitable services and a desire to meet accreditation requirements.

Clinical Use of an Electronic Pre-Visit Questionnaire Soliciting Patient Visit Goals and Interim History: A Retrospective Comparison Between Safety-net and Non-Safety-net Clinics.

INTRODUCTION/OBJECTIVES: We examined an initial step towards co-generation of clinic notes by inviting patients to complete a pre-visit questionnaire that could be inserted into clinic notes by providers and describe the experience in a safety-net and non-safety-net clinic. METHODS: We sent an electronic pre-visit questionnaire on visit goals and interim history to patients at a safety-net clinic and a non-safety-net clinic before clinic visits. We compared questionnaire utilization between clinics during a one-year period and performed a chart review of a sample of patients to examine demographics, content and usage of patient responses to the questionnaire. RESULTS: While use was low in both clinics, it was lower in the safety-net clinic (3%) compared to the non-safety-net clinic (10%). We reviewed a sample of respondents and found they were more likely to be White compared to the overall clinic populations (p < 0.05). There were no statistically significant differences in patient-typed notes (word count and number of visit goals) between the safety-net and non-safety-net samples however, patients at the safety-net clinic were less likely to have all of their goals addressed within the PCP documentation, compared to the non-safety-net clinic. CONCLUSIONS: Given potential benefits of this questionnaire as a communication tool, addressing barriers to use of technology among vulnerable patients is needed, including access to devices and internet, and support from caregivers or culturally concordant peer navigators.

Sharing clinical notes, and placebo and nocebo effects: Can documentation affect patient health?

This paper connects findings from the field of placebo studies with research into patients' interactions with their clinician's visit notes, housed in their electronic health records. We propose specific hypotheses about how features of clinicians' written notes might trigger mechanisms of placebo and nocebo effects to elicit positive or adverse health effects among patients. Bridging placebo studies with (a) survey data assaying patient and clinician experiences with portals and (b) randomized controlled trials provides preliminary support for our hypotheses. We conclude with actionable proposals for testing our understanding of the health effects of access to visit notes.

Care partners reading patients' visit notes via patient portals: Characteristics and perceptions.

BACKGROUND: Care partners are key members of patients' health care teams, yet little is known about their experiences accessing patient information via electronic portals. OBJECTIVE: To better understand the characteristics and perceptions of care partners who read patients' electronic visit notes. PATIENT INVOLVEMENT: Focus groups with diverse patients from a community health center provided input into survey development. METHODS: We contacted patient portal users at 3 geographically distinct sites in the US via email in 2017 for an online survey including open ended questions which we qualitatively analyzed. RESULTS: Respondents chose whether to answer as care partners (N = 874) or patients (N = 28,782). Among care partner respondents, 44% were spouses, 43% children/other family members, and 14% friends/neighbors/other. Both care partners and patients reported that access to electronic notes was very important for promoting positive health behaviors, but care partners' perceptions of importance were consistently more positive than patients' perceptions of engagement behaviors. Open-ended comments included positive benefits such as: help with remembering the plan for care, coordinating care with other doctors, decreasing stress of care giving, improving efficiency of visits, and supporting patients from a geographical distance. They also offered suggestions for improving electronic portal and note experience for care partners such as having a separate log on for care partners; having doctors avoid judgmental language in their notes; and the ability to prompt needed medical care for patients. DISCUSSION: Care partners value electronic access to patients' health information even more than patients. The majority of care partners were family members, whose feedback is important for improving portal design that effectively engages these care team members. PRACTICAL VALUE: Patient care in the time of COVID-19 increasingly requires social distancing which may place additional burden on care partners supporting vulnerable patients. Access to patient notes may promote quality of care by keeping care partners informed, and care partner's input should be used to optimize portal design and electronic access to patient information.

Hospital Outdoor Spaces: User Experience and Implications for Design.

OBJECTIVES: This article aims to describe users' perspectives about the impact of hospital outdoor spaces on the patient experience in a postacute setting. BACKGROUND: Hospital outdoor space is an important element in healthcare facility design. There is growing evidence that access to green space within hospital outdoor spaces facilitates healing. However, limited studies have explored the users' perspective regarding how hospital outdoor spaces impact the patient experience. METHODS: As part of a hospital preoccupancy evaluation, users (patients, family, and staff) were invited to participate in a semi-structured interview to describe their experiences in the hospital's outdoor spaces. Data were analyzed using inductive thematic analysis. RESULTS: Seventy-four individuals participated in this study: 24 inpatients, 15 outpatients, 11 family, 23 staff, and one volunteer. Three themes were identified: (1) outdoor space benefits healing by helping patients focus on life beyond their illness, (2) design of healthcare spaces facilitates patients' access to outdoor space to benefit healing, and (3) programming in the outdoor space promotes healing and recovery. CONCLUSIONS: This study describes the users' perspective regarding the value of outdoor spaces and the design elements that influence the patient experience.

Patients Contributing to Visit Notes: Mixed Methods Evaluation of OurNotes.

BACKGROUND: Secure patient portals are widely available, and patients use them to view their electronic health records, including their clinical notes. We conducted experiments asking them to cogenerate notes with their clinicians, an intervention called OurNotes. OBJECTIVE: This study aims to assess patient and provider experiences and attitudes after 12 months of a pilot intervention. METHODS: Before scheduled primary care visits, patients were asked to submit a word-constrained, unstructured interval history and an agenda for what they would like to discuss at the visit. Using site-specific methods, their providers were invited to incorporate the submissions into notes documenting the visits. Sites served urban, suburban, and rural patients in primary care practices in 4 academic health centers in Boston (Massachusetts), Lebanon (New Hampshire), Denver (Colorado), and Seattle (Washington). Each practice offered electronic access to visit notes (open notes) to its patients for several years. A mixed methods evaluation used tracking data and electronic survey responses from patients and clinicians. Participants were 174 providers and 1962 patients who submitted at least 1 previsit form. We asked providers about the usefulness of the submissions, effects on workflow, and ideas for the future. We asked patients about difficulties and benefits of providing the requested information and ideas for future improvements. RESULTS: Forms were submitted before 9.15% (5365/58,652) eligible visits, and 43.7% (76/174) providers and 26.76% (525/1962) patients responded to the postintervention evaluation surveys; 74 providers and 321 patients remembered receiving and completing the forms and answered the survey questions. Most clinicians thought interim patient histories (69/74, 93%) and patient agendas (72/74, 97%) as good ideas, 70% (52/74) usually or always incorporated them into visit notes, 54% (40/74) reported no change in visit length, and 35% (26/74) thought they saved time. Their most common suggestions related to improving notifications when patient forms were received, making it easier to find the form and insert it into the note, and educating patients about how best to prepare their submissions. Patient respondents were generally well educated, most found the history (259/321, 80.7%) and agenda (286/321, 89.1%) questions not difficult to answer; more than 92.2% (296/321) thought sending answers before the visit a good idea; 68.8% (221/321) thought the questions helped them prepare for the visit. Common suggestions by patients included learning to write better answers and wanting to know that their submissions were read by their clinicians. At the end of the pilot, all participating providers chose to continue the OurNotes previsit form, and sites considered expanding the intervention to more clinicians and adapting it for telemedicine visits. CONCLUSIONS: OurNotes interests patients, and providers experience it as a positive intervention. Participation by patients, care partners, clinicians, and electronic health record experts will facilitate further development.

Rapid access rehabilitation after exacerbations of COPD - A qualitative study.

PURPOSE: Rehabilitation after acute exacerbations of chronic obstructive pulmonary disease (AECOPD) is beneficial, but its feasibility is questionable. Feasibility is potentiated by stakeholder involvement during program development. We aimed to explore the perspectives of various stakeholders towards an innovative rapid access rehabilitation (RAR) program for patients immediately following hospitalization for an AECOPD. METHOD: Semi-structured interviews were conducted with patients recently hospitalized for AECOPD, healthcare professionals (HCP) and policymakers providing care for such patients. Thematic analysis was performed. RESULTS: Three patients (1 female; 62-89 years; GOLD D), ten HCP (3 females, 31-71 years) and three policymakers (3 females, 38-55 years) participated. Patients, HCP and policymakers shared similar visions for the development of a RAR program. Five main themes and ten subthemes were identified. They comprised: Pre-RAR aspects (Management properties, Eligibility), RAR program (Outcomes, Structure, Components), RAR optimization (Referral, Uptake), Partnership (Collaboration, Dedicated Coordinator) and COVID-19 (Adaptations). Essential elements included: identifying clear eligibility criteria, addressing patients' needs at the time of hospital discharge, having a structured education and self-management program and modifying to respond to unexpected events (e.g., COVID). Suggestions to optimize referrals included a clear referral pathway, improving program awareness, assigning dedicated care coordinators to provide patient support throughout the program and establishing strong partnerships among different care settings and providers. CONCLUSIONS: Identifying the essential program elements and approaches to optimize referrals, were considered to be key design approaches for success in establishing RAR.

Words Matter: What Do Patients Find Judgmental or Offensive in Outpatient Notes?

BACKGROUND: Sharing outpatient notes with patients may bring clinically important benefits, but notes may sometimes cause patients to feel judged or offended, and thereby reduce trust. OBJECTIVE: As part of a larger survey examining the effects of open notes, we sought to understand how many patients feel judged or offended due to something they read in outpatient notes, and why. DESIGN: We analyzed responses from a large Internet survey of adult patients who used secure patient portals and had at least 1 visit note available in a 12-month period at 2 large academic medical systems in Boston and Seattle, and in a rural integrated health system in Pennsylvania. PARTICIPANTS: Adult ambulatory patients with portal accounts in health systems that offered open notes for up to 7 years. APPROACH: (1) Quantitative analysis of 2 dichotomous questions, and (2) qualitative thematic analysis of free-text responses on what patients found judgmental or offensive. KEY RESULTS: Among 22,959 patient respondents who had read at least one note and answered the 2 questions, 2,411 (10.5%) reported feeling judged and/or offended by something they read in their note(s). Patients who reported poor health, unemployment, or inability to work were more likely to feel judged or offended. Among the 2,411 patients who felt judged and/or offended, 2,137 (84.5%) wrote about what prompted their feelings. Three thematic domains emerged: (1) errors and surprises, (2) labeling, and (3) disrespect. CONCLUSIONS: One in 10 respondents reported feeling judged/offended by something they read in an outpatient note due to the perception that it contained errors, surprises, labeling, or evidence of disrespect. The content and tone may be particularly important to patients in poor health. Enhanced clinician awareness of the patient perspective may promote an improved medical lexicon, reduce the transmission of bias to other clinicians, and reinforce healing relationships.

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.

Validation of a brief scale to assess ambulatory patients' perceptions of reading visit notes: a scale development study.

OBJECTIVES: To develop and evaluate the validity of a scale to assess patients' perceived benefits and risks of reading ambulatory visit notes online (open notes). DESIGN: Four studies were used to evaluate the construct validity of a benefits and risks scale. Study 1 refined the items; study 2 evaluated underlying factor structure and identified the items; study 3 evaluated study 2 results in a separate sample; and study 4 examined factorial invariance of the developed scale across educational subsamples. SETTING: Ambulatory care in three large health systems in the USA. PARTICIPANTS: Participants in three US health systems who responded to one of two online surveys asking about benefits and risks of reading visit notes: a psychometrics survey of primary care patients, and a large general survey of patients across all ambulatory specialties. Sample sizes: n=439 (study 1); n=439 (study 2); n=500 (study 3); and n=250 (study 4). PRIMARY AND SECONDARY OUTCOME MEASURES: Questionnaire items about patients' perceived benefits and risks of reading online visit notes. RESULTS: Study 1 resulted in the selection of a 10-point importance response option format over a 4-point agreement scale. Exploratory factor analysis (EFA) in study 2 resulted in two-factor solution: a four-item benefits factor with good reliability (alpha=0.83) and a three-item risks factor with poor reliability (alpha=0.52). The factor structure was confirmed in study 3, and confirmatory factor analysis of benefit items resulted in an excellent fitting model, X2(2)=2.949; confirmatory factor index=0.998; root mean square error of approximation=0.04 (0.00, 0.142); loadings 0.68-0.86; alpha=0.88. Study 4 supported configural, measurement and structural invariance for the benefits scale across high and low-education patient groups. CONCLUSIONS: The findings suggest that the four-item benefits scale has excellent construct validity and preliminary evidence of generalising across different patient populations. Further scale development is needed to understand perceived risks of reading open notes.

Six countries, six individuals: resourceful patients navigating medical records in Australia, Canada, Chile, Japan, Sweden and the USA.

In the absence of international standards, widely differing attitudes and laws, medical and social cultures strongly influence whether and how patients may access their medical records in various settings of care. Reviewing records, including the notes clinicians write, can help shape how people participate in their own care. Aided at times by new technologies, individual patients and care partners are repurposing existing tools and designing innovative, often 'low-tech' ways to collect, sort and interpret their own health information. To illustrate diverse approaches that individuals may take, six individuals from six nations offer anecdotes demonstrating how they are learning to collect, assess and benefit from their personal health information.

Patients Evaluate Visit Notes Written by Their Clinicians: a Mixed Methods Investigation.

BACKGROUND: Patients actively involved in their care demonstrate better health outcomes. Using secure internet portals, clinicians are increasingly offering patients access to their narrative visit notes (open notes), but we know little about their understanding of notes written by clinicians. OBJECTIVE: We examined patients' views on the clarity, accuracy, and thoroughness of notes, their suggestions for improvement, and associations between their perceptions and willingness to recommend clinicians to others. DESIGN: We conducted an online survey of patients in 3 large health systems, June-October 2017. We performed a mixed methods analysis of survey responses regarding a self-selected note. PARTICIPANTS: Respondents were 21,664 patients aged 18 years or older who had read at least 1 open note in the previous 12 months. MAIN MEASURES: We asked to what degree the patient recalled understanding the note, whether it described the visit accurately, whether anything important was missing, for suggestions to improve the note, and whether they would recommend the authoring clinician to others. KEY RESULTS: Nearly all patients (96%) reported they understood all or nearly all of the self-selected note, with few differences by clinician type or specialty. Overall, 93% agreed or somewhat agreed the note accurately described the visit, and 6% reported something important missing from the note. The most common suggestions for improvement related to structure and content, jargon, and accuracy. Patients who reported understanding only some or very little of the note, or found inaccuracies or omissions, were much less likely to recommend the clinician to family and friends. CONCLUSIONS: Patients overwhelmingly report understanding their visit notes and usually find them accurate, with few disparities according to sociodemographic or health characteristics. They have many suggestions for improving their quality, and if they understand a note poorly or find inaccuracies, they often have less confidence in their clinicians.