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.

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.

Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes.

Importance: As health information transparency increases, patients more often seek their health data. More than 44 million patients in the US can now readily access their ambulatory visit notes online, and the practice is increasing abroad. Few studies have assessed documentation errors that patients identify in their notes and how these may inform patient engagement and safety strategies. Objective: To assess the frequency and types of errors identified by patients who read open ambulatory visit notes. Design, Setting, and Participants: In this survey study, a total of 136 815 patients at 3 US health care organizations with open notes, including 79 academic and community ambulatory care practices, received invitations to an online survey from June 5 to October 20, 2017. Patients who had at least 1 ambulatory note and had logged onto the portal at least once in the past 12 months were included. Data analysis was performed from July 3, 2018, to April 27, 2020. Exposures: Access to ambulatory care open notes through patient portals for up to 7 years (2010-2017). Main Outcomes and Measures: Proportion of patients reporting a mistake and how serious they perceived the mistake to be, factors associated with finding errors characterized by patients as serious, and categories of patient-reported errors. Results: Of 136 815 patients who received survey invitations, 29 656 (21.7%) responded and 22 889 patients (mean [SD] age, 55.16 [15.96] years; 14 447 [63.1%] female; 18 301 [80.0%] white) read 1 or more notes in the past 12 months and completed error questions. Of these patients, 4830 (21.1%) reported a perceived mistake and 2043 (42.3%) reported that the mistake was serious (somewhat serious: 1563 [32.4%]; very serious: 480 [9.9%]). In multivariable analysis, female patients (relative risk [RR], 1.79; 95% CI, 1.72-1.85), more educated patients (RR, 1.38; 95% CI, 1.29-1.48), sicker patients (RR, 1.89; 95% CI, 1.84-1.94), those aged 45 to 64 years (RR, 2.23; 95% CI, 2.06-2.42), those 65 years or older (RR, 2.00; 95% CI, 1.73-2.32), and those who read more than 1 note (2-3 notes: RR, 1.82; 95% CI, 1.34-2.47; ≥4 notes: RR, 3.09; 95% CI, 2.02-4.73) were more likely to report a mistake that they found to be serious compared with their reference groups. After categorization of patient-reported very serious mistakes, those specifically mentioning the word diagnosis or describing a specific error in current or past diagnoses were most common (98 of 356 [27.5%]), followed by inaccurate medical history (85 of 356 [23.9%]), medications or allergies (50 of 356 [14.0%]), and tests, procedures, or results (30 of 356 [8.4%]). A total of 23 (6.5%) reflected notes reportedly written on the wrong patient. Of 433 very serious errors, 255 (58.9%) included at least 1 perceived error potentially associated with the diagnostic process (eg, history, physical examination, tests, referrals, and communication). Conclusions and Relevance: In this study, patients who read ambulatory notes online perceived mistakes, a substantial proportion of which they found to be serious. Older and sicker patients were twice as likely to report a serious error compared with younger and healthier patients, indicating important safety and quality implications. Sharing notes with patients may help engage them to improve record accuracy and health care safety together with practitioners.

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.

Patient portals and personal health information online: perception, access, and use by US adults.

BACKGROUND: Access to online patient portals is key to improving care, but we have limited understanding of patient perceptions of online portals and the characteristics of people who use them. METHODS: Using a national survey of 3677 respondents, we describe perceptions and utilization of online personal health information (PHI) portals. RESULTS: Most respondents (92%) considered online PHI access important, yet only 34% were offered access to online PHI by a health care provider, and just 28% accessed online PHI in the past year. While there were no differences across race or ethnicity in importance of access, black and Hispanic respondents were significantly less likely to be offered access ( P = .006 and <.001, respectively) and less likely to access their online PHI ( P = .041 and <.001, respectively) compared to white and non-Hispanic respondents. CONCLUSION: Health care providers are crucial to the adoption and use of online patient portals and should be encouraged to offer consistent access regardless of patient race and ethnicity.

Patients learning to read their doctors' notes: the importance of reminders.

OBJECTIVE: To examine whether patients invited to review their clinicians' notes continue to access them and to assess the impact of reminders on whether patients continued to view notes. MATERIALS AND METHODS: We followed OpenNotes trial participants for 2 years at Beth Israel Deaconess Medical Center (BIDMC) and Geisinger Health System (GHS). Electronic invitations alerting patients to signed notes stopped at GHS after year 1, creating a natural experiment to assess the impact of reminders. We used generalized linear models to measure whether notes were viewed within 30 days of availability. RESULTS: We identified 14 360 patients (49 271 visits); mean age 52.2; 57.8% female. In year 1, patients viewed 57.5% of their notes, and their interest in viewing notes persisted over time. In year 2, BIDMC patients viewed notes with similar frequency. In contrast, GHS patients viewed notes far less frequently, a change starting when invitations ceased (RR 0.29 [0.26-0.32]) and persisting to the end of the study (RR 0.20 [0.17-0.23]). A subanalysis of BIDMC patients revealed that black and other/multiracial patients also continued to view notes, although they were overall less likely to view notes compared with whites (RR 0.75 [0.67-0.83] and 0.93 [0.89-0.98], respectively). DISCUSSION: As millions of patients nationwide increasingly gain access to clinicians' notes, explicit email invitations to review notes may be important for fostering patient engagement and patient-doctor communication. CONCLUSION: Note viewing persists when accompanied by email alerts, but may decline substantially in their absence. Non-white patients at BIDMC viewed notes less frequently than whites, although their interest also persisted.

Characteristics of Patients Who Report Confusion After Reading Their Primary Care Clinic Notes Online.

Patient access to online electronic medical records (EMRs) is increasing and may offer benefits to patients. However, the inherent complexity of medicine may cause confusion. We elucidate characteristics and health behaviors of patients who report confusion after reading their doctors' notes online. We analyzed data from 4,528 patients in Boston, MA, central Pennsylvania, and Seattle, WA, who were granted online access to their primary care doctors' clinic notes and who viewed at least one note during the 1-year intervention. Three percent of patients reported confusion after reading their visit notes. These patients were more likely to be at least 70 years of age (p < .0001), have fewer years of education (p < .0017), be unemployed (p < .0001), have lower levels of self-reported health (p < .0043), and worry more after reading visit notes (relative risk [RR] 4.83; confidence interval [CI] 3.17, 7.36) compared to patients who were not confused. In adjusted analyses, they were less likely to report feeling more in control of their health (RR 0.42; CI 0.25, 0.71), remembering their care plan (RR 0.26; CI 0.17, 0.42), and understanding their medical conditions (RR 0.32; CI 0.19, 0.54) as a result of reading their doctors' notes compared to patients who were not confused. Patients who were confused by reading their doctors' notes were less likely to report benefits in health behaviors. Understanding this small subset of patients is a critical step in reducing gaps in provider-patient communication and in efforts to tailor educational approaches for patients.

Effects of spiritual healing for women undergoing long-term hormone therapy for breast cancer: a qualitative investigation.

BACKGROUND: Spiritual Healing is widely available and used, but is a neglected area for research and its biologic and psychologic mechanisms are not understood. The side-effects of long-term hormonal therapy for breast cancer are onerous and have been reported to lead to "drug holidays" that could diminish the long-term treatment benefits. It was investigated whether Spiritual Healing could support patients with breast cancer undergoing this treatment. METHODS: The qualitative observation study took place in a specialist research facility in a general hospital. Spiritual Healing was provided by 4 healers registered with the National Federation of Spiritual Healers. Twelve (12) patients with breast cancer undergoing long-term hormone treatment and who found the effects onerous, self-referred themselves and were given ten weekly sessions of approximately 40 minutes each. Data collected included participant's daily records, direct observations noted by healers, the researcher's field diary and a one-to-one semi-structured interview. FINDINGS: The positive effects of Spiritual Healing included alleviation of the physical side-effects of their treatment, increased energy levels, enhanced well-being, emotional relaxation, and re-engagement with precancer activities. Although 1 participant admitted considering a drug holiday prior to joining the study, none of the participants felt tempted to stop their hormonal treatments while receiving Spiritual Healing. CONCLUSIONS: These qualitative findings indicate that Spiritual Healing has the potential to support patients with breast cancer in the maintenance of their long-term orthodox treatments. Further research is needed to test Spiritual Healing as a cost-effective complementary therapy, for those undergoing long-term cancer treatments.

Inviting patients to read their doctors' notes: patients and doctors look ahead: patient and physician surveys.

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 90 203 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. 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. PRIMARY FUNDING SOURCE: The Robert Wood Johnson Foundation's Pioneer Portfolio, Drane Family Fund, and Koplow Charitable Foundation.

Can administrative claim file review be used to gather physical therapy, occupational therapy, and psychology payment data and functional independence measure scores? Implications for rehabilitation providers in the private health sector.

PURPOSE: Rehabilitation costs for spinal-cord injury (SCI) are increasingly borne by Canada's private health system. Because of poor outcomes, payers are questioning the value of their expenditures, but there is a paucity of data informing analysis of rehabilitation costs and outcomes. This study evaluated the feasibility of using administrative claim file review to extract rehabilitation payment data and functional status for a sample of persons with work-related SCI. METHODS: Researchers reviewed 28 administrative e-claim files for persons who sustained a work-related SCI between 1996 and 2000. Payment data were extracted for physical therapy (PT), occupational therapy (OT), and psychology services. Functional Independence Measure (FIM) scores were targeted as a surrogate measure for functional outcome. Feasibility was tested using an existing approach for evaluating health services data. RESULTS: The process of administrative e-claim file review was not practical for extraction of the targeted data. CONCLUSIONS: While administrative claim files contain some rehabilitation payment and outcome data, in their present form the data are not suitable to inform rehabilitation services research. A new strategy to standardize collection, recording, and sharing of data in the rehabilitation industry should be explored as a means of promoting best practices.

Health professional students in community service: insights from trainees and their mentors.

OBJECTIVES: To gain insights from the experiences of student health professionals working with agencies caring for the underserved. METHODS: Five hundred and sixty-six (566) U.S. Albert Schweitzer Fellows from 90 professional schools in six sites participated in year-long mentored, entrepreneurial service and leadership development projects in community agencies. Focusing on their experiences, Fellows completed pre- and post-service surveys, and agency mentors completed a post-service survey about their experiences. RESULTS: Fellows' confidence in 11 of 16 service-related skills increased, and their concerns about lack of knowledge, skills, experience, recognition, and mentoring as barriers to service decreased. Their concerns about time constraints increased. Agency mentors reported that 85% of Fellows' projects made significant contributions to their agencies or clients. CONCLUSIONS: An entrepreneurial, mentored service experience can have a positive impact on health professional students and may provide benefits to the communities served.

Challenges of rehabilitation case mix measurement in Ontario hospitals.

Case mix classification systems have been adopted in many countries as a method to manage and finance healthcare in acute care settings; the most popular systems are based on diagnosis related groups. The most successful of those case mix systems differentiate patient types by reflecting both the intensity of resources consumed and patient acuity. Case mix systems for use with non-acute hospital activity have not been as wide-spread; other than in the United States, little attention has been directed towards case mix classification for rehabilitation activity. In a province with over 13 million inhabitants with 2496 rehabilitation beds, inpatient rehabilitation is an important component of hospital care in Ontario, Canada, and consists of the spectrum of intensive rehabilitation activities intended to restore function. Although case mix adjusted activity has been the currency in Ontario's Integrated Population Based Allocation hospital funding formula, rehabilitation activity has not been subjected to case mix measurement. A project to examine case mix classification for adult inpatient rehabilitation activity was initiated by the Ontario Ministry of Health and Long-Term Care whose outcome was a case mix system and associated cost weights that would result in rehabilitation activity being incorporated into the hospital funding formula. The process described in this study provides Ontario's provincial government with a case mix classification system for adult inpatient rehabilitation activity although there remain areas for improvement.

The economic benefits of health information exchange interoperability for Australia.

OBJECTIVE: To estimate costs and benefits for Australia of implementing health information exchange interoperability among health care providers and other health care stakeholders. DESIGN: A cost-benefit model considering four levels of interoperability (Level 1, paper based; Level 2, machine transportable; Level 3, machine readable; and Level 4, machine interpretable) was developed for Government-funded health services, then validated by expert review. RESULTS: Roll-out costs for Level 3 and Level 4 interoperability were projected to be $21.5 billion and $14.2 billion, respectively, and steady-state costs, $1470 million and $933 million per annum, respectively. Level 3 interoperability would achieve steady-state savings of $1820 million, and Level 4 interoperability, $2990 million, comprising transactions of: laboratory $1180 million (39%); other providers, $893 million (30%); imaging centre, $680 million (23%); pharmacy, $213 million (7%) and public health, $27 million (1%). Net steady-state Level 4 benefits are projected to be $2050 million: $1710 million more than Level 3 benefits of $348 million, reflecting reduced interface costs for Level 4 interoperability due to standardisation of the semantic content of Level 4 messages. CONCLUSIONS: Benefits to both providers and society will accrue from the implementation of interoperability. Standards are needed for the semantic content of clinical messages, in addition to message exchange standards, for the full benefits of interoperability to be realised. An Australian Government policy position supporting such standards is recommended.

The experience of chronic back pain: accounts of loss in those seeking help from pain clinics.

BACKGROUND: This study responded to the need for greater understanding of the experiences that help to shape the worldviews of chronic back patients as they seek help from pain clinics. AIM: To elaborate on the lived experience of chronic back pain in those actively seeking help from pain clinics. METHODS: This was a qualitative study, based on an interpretative phenomenological approach. As part of in-depth interviews, participants were invited to 'tell their story' from the time their pain began. Participants were twelve male and eight female patients, all of whom were diagnosed as having chronic benign back pain and had recently attended one of two pain clinics as new referrals. The data were analysed thematically. FINDINGS: Loss was one of five major themes to emerge. The narrative accounts revealed a catalogue of socio-economic and other material losses including loss of physical and mental abilities, occupational and social activities, job or role. In those of working age, these led to financial hardship and changes in interpersonal relationships, culminating in loss of self-worth, future and hope. CONCLUSIONS: The findings suggest that material losses, as well as perceptions of loss, are prominent issues for those of working age seeking help from pain clinics for chronic back pain, and may need to be acknowledged and addressed as part of therapeutic interventions. The possibility of age-related differences in pain-related loss may be worthy of further investigation.

The value of healthcare information exchange and interoperability in New York state.

With heightened interest in Regional Healthcare Information Organizations, policy makers may require guidance on the potential benefits and costs of systems that enable healthcare information exchange and interoperability (HIEI) in their communities. The United Hospital Fund of New York (UHF) engaged CITL to determine the net value of electronic transactions between state healthcare stakeholders with the goal to inform New York healthcare IT policy discussion.

The value of health care information exchange and interoperability.

In this paper we assess the value of electronic health care information exchange and interoperability (HIEI) between providers (hospitals and medical group practices) and independent laboratories, radiology centers, pharmacies, payers, public health departments, and other providers. We have created an HIEI taxonomy and combined published evidence with expert opinion in a cost-benefit model. Fully standardized HIEI could yield a net value of dollar 77.8 billion per year once fully implemented. Nonstandardized HIEI offers smaller positive financial returns. The clinical impact of HIEI for which quantitative estimates cannot yet be made would likely add further value. A compelling business case exists for national implementation of fully standardized HIEI.