Importance The 21st Century Cures Act of 2016 requires that patients be given electronic access to all the information in their electronic medical records. The regulations for implementation of this law give patients far easier access to information about their care, including the notes their clinicians write. Objective To assess clinicians’ views and experiences with sharing clinical notes (open notes) with patients. Design, Setting, and Participants Web-based survey study of physicians, advanced practice nurses, registered nurses, physician assistants, and therapists at 3 health systems in Boston, Massachusetts; Seattle, Washington; and rural Pennsylvania where notes have been shared across all outpatient specialties for at least 4 years. Participants were clinicians in hospital-based offices and community practices who had written at least 1 note opened by a patient in the year prior to the survey, which was administered from May 21, 2018, to August 31, 2018. Main Outcomes and Measures Clinicians’ experiences with and perceptions of sharing clinical notes with patients. Results Invitations were sent to 6064 clinicians; 1628 (27%) responded. Respondents were more likely than nonrespondents to be female (65% vs 55%) and to be younger (mean [SD] age, 42.1 [12.6] vs 44.9 [12.7] years). The majority of respondents were physicians (951 [58%]), female (1023 [65%]), licensed to practice in 2000 or later (940 [61%]), and spent fewer than 40 hours per week in direct patient care (1083 [71%]). Most viewed open notes positively, agreeing they are a good idea (1182 participants [74%]); of 1314 clinicians who were aware that patients were reading their notes, 965 (74%) agreed that open notes were useful for engaging patients. In all, 798 clinicians (61%) would recommend the practice to colleagues. A total of 292 physicians (37%) reported spending more time on documentation, and many reported specific changes in the way they write their notes, the most frequent of which related to use of language that could be perceived as critical of the patient (422 respondents [58%]). Most physicians (1234 [78%]) favored being able to determine readily that their notes had been read by their patients. Conclusions and Relevance In this survey of clinicians in a wide range of specialties who had several years of experience offering their patients ready access to their notes, more than two-thirds supported this new practice. Even among subgroups of clinicians who were less enthusiastic, most endorsed the idea of sharing notes and believed the practice could be helpful for engaging patients more actively in their care.

/pdf/the-views-and-experiences-of-clinicians-sharing-medical-39dsbilumk.pdf

The Views and Experiences of Clinicians Sharing Medical Record Notes With Patients.

Mobile health apps (MHAs) and medical apps (MAs) are becoming increasingly popular as digital interventions in a wide range of health-related applications in almost all sectors of healthcare. The surge in demand for digital medical solutions has been accelerated by the need for new diagnostic and therapeutic methods in the current coronavirus disease 2019 pandemic. This also applies to clinical practice in gastroenterology, which has, in many respects, undergone a recent digital transformation with numerous consequences that will impact patients and health care professionals in the near future. MHAs and MAs are considered to have great potential, especially for chronic diseases, as they can support the self-management of patients in many ways. Despite the great potential associated with the application of MHAs and MAs in gastroenterology and health care in general, there are numerous challenges to be met in the future, including both the ethical and legal aspects of applying this technology. The aim of this article is to provide an overview of the current status of MHA and MA use in the field of gastroenterology, describe the future perspectives in this field and point out some of the challenges that need to be addressed.

Impact of mobile health and medical applications on clinical practice in gastroenterology.

Background Ongoing efforts worldwide to provide patients with patient-accessible electronic health records (PAEHRs) have led to variability in adolescent and parental access across providers, regions, and countries. There is no compilation of evidence to guide policy decisions in matters such as access age and the extent of parent proxy access. In this paper, we outline our scoping review of different stakeholders’ (including but not limited to end users) views, use, and experiences pertaining to web-based access to electronic health records (EHRs) by children, adolescents, and parents. Objective The aim of this study was to identify, categorize, and summarize knowledge about different stakeholders’ (eg, children and adolescents, parents, health care professionals [HCPs], policy makers, and designers of patient portals or PAEHRs) views, use, and experiences of EHR access for children, adolescents, and parents. Methods A scoping review was conducted according to the Arksey and O’Malley framework. A literature search identified eligible papers that focused on EHR access for children, adolescents, and parents that were published between 2007 and 2021. A number of databases were used to search for literature (PubMed, CINAHL, and PsycINFO). Results The approach resulted in 4817 identified articles and 74 (1.54%) included articles. The papers were predominantly viewpoints based in the United States, and the number of studies on parents was larger than that on adolescents and HCPs combined. First, adolescents and parents without access anticipated low literacy and confidentiality issues; however, adolescents and parents who had accessed their records did not report such concerns. Second, the main issue for HCPs was maintaining adolescent confidentiality. This remained an issue after using PAEHRs for parents, HCPs, and other stakeholders but was not an experienced issue for adolescents. Third, the viewpoints of other stakeholders provided a number of suggestions to mitigate issues. Finally, education is needed for adolescents, parents, and HCPs. Conclusions There is limited research on pediatric PAEHRs, particularly outside the United States, and on adolescents’ experiences with web-based access to their records. These findings could inform the design and implementation of future regulations regarding access to PAEHRs. Further examination is warranted on the experiences of adolescents, parents, and HCPs to improve usability and utility, inform universal principles reducing the current arbitrariness in the child’s age for own and parental access to EHRs among providers worldwide, and ensure that portals are equipped to safely and appropriately manage a wide variety of patient circumstances. International Registered Report Identifier (IRRID) RR2-10.2196/36158

/pdf/views-use-and-experiences-of-web-based-access-to-pediatric-2ugb63mw.pdf

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

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. 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. 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. Respondents were 21,664 patients aged 18 years or older who had read at least 1 open note in the previous 12 months. 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. 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. 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.

/pdf/patients-evaluate-visit-notes-written-by-their-clinicians-a-1w7zaxaebc.pdf

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

An increasing number of countries are implementing patient access to electronic health records (EHR). However, EHR access for parents, children and adolescents presents ethical challenges of data integrity, and regulations vary across providers, regions, and countries. In the present study, we compare EHR access policy for parents, children and adolescents in four countries. Documentation from three areas: upper age limit of minors for which parents have access; age at which minors obtain access; and possibilities of access restriction and extension was collected from Sweden, Norway, Finland, and Estonia. Results showed that while all systems provided parents with automatic proxy access, age limits for its expiry differed. Furthermore, a lower minimum age than 18 for adolescent access was present in two of four countries. Differences between countries and potential implications for adolescents are discussed. We conclude that experiences of various approaches should be explored to promote the development of EHR regulations for parents, children and adolescents that increases safety, quality, and equality of care. 

/pdf/minor-and-parental-access-to-electronic-health-records-2ecryaph.pdf

Minor and Parental Access to Electronic Health Records: Differences Across Four Countries

Objectives The aim of the study was to evaluate feasibility and utility of an electronic health record (EHR) activity to assess transitional readiness, deliver services to meet individual needs, and to track patient progress. Methods We developed a Transition EHR activity (TEA) to track patients through a standardized process where transition readiness is annually assessed and services distributed based on need. The process assesses transition skills starting at age 12 years and sets goals through shared decision-making, delivers resources according to need, reviews patients' personal medical histories, and documents healthcare transfer to adult gastroenterology. We piloted TEA among patients with inflammatory bowel disease (IBD) ages ≥12 years. Distribution to patients was measured and tolerability assessed via patient self-report evaluations. Results Since launch, TEA has been distributed to all eligible patients (N = 53) with a median age of 16 (14,18) years (median [IQR]), 62% male, 58% white, 26% Hispanic at our weekly dedicated IBD clinic. All have performed the transition skills' self-assessment and practicum, and set transition goals with their healthcare provider. Of these individuals, 41 (77%) participated in survey feedback. On a utility rating scale of 0 (not helpful at all) to 10 (very helpful), patients reported median (IQR) utility scores of 8 (7,10) for the transition readiness assessment, 9 (7,10) for transition resources provided, and 9 (7,10) for the medical history summary. Most (91%) would recommend TEA to other patients. Conclusions TEA standardized delivery of resources among pediatric IBD patients and was well received and friendly to clinical workflow.

Harnessing the Electronic Health Record to Distribute Transition Services to Adolescents With Inflammatory Bowel Disease.

Adolescents' and Young Adults' Satisfaction with and Understanding of Medical Notes from a Pediatric Gastroenterology Practice: A Cross-Sectional Cohort Study.

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Harnessing the Electronic Health Record to Distribute Transition Services to Adolescents With Inflammatory Bowel Disease.

Adolescents' and Young Adults' Satisfaction with and Understanding of Medical Notes from a Pediatric Gastroenterology Practice: A Cross-Sectional Cohort Study.