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Introduction Poor usability is a barrier to widespread adoption of electronic health records (EHR). Providing good usability is especially challenging in the health care context, as there is a wide variety of patient users. Usability benchmarking is an approach for improving usability by evaluating and comparing the strength and weaknesses of systems. The main purpose of this study is to benchmark usability of patient portals across countries. Methods A mixed-methods survey approach was applied to benchmark the national patient portals offering patient access to EHR in Estonia, Finland, Norway, and Sweden. These Nordic countries have similar public healthcare systems, and they are pioneers in offering patients access to EHR for several years. In a survey of 29,334 patients, both patients’ quantitative ratings of usability and their qualitative descriptions of very positive and very negative peak experiences of portal use were collected. Results The usability scores ranged from good to fair level of usability. The narratives of very positive and very negative experiences included the benefits of the patient portals and experienced usability issues. The regression analysis of results showed that very positive and negative experiences of patient portal use explain 19–35% of the variation of usability scores in the four countries. The percentage of patients who reported very positive or very negative experiences in each country was unrelated to the usability scores across countries. Conclusions The survey approach could be used to evaluate usability with a wide variety of users and it supported learning from comparison across the countries. The combination of quantitative and qualitative data provided an approximation of the level of the perceived usability, and identified usability issues to be improved and useful features that patients appreciate. Further work is needed to improve the comparability of the varied samples across countries., De två sista författarna delar sistaförfattarskapet

This study reports the results of a university course aimed at exploring and improving cooperation in healthcare with both cancer survivors, loved ones and healthcare professionals as students. Central to the course was the understanding of and moving between each other's perspectives. Operating within a framework inspired by problem-based learning (PBL), small groups consisting of at least one cancer survivor, one loved one and one healthcare professional, collaboratively created scenarios based on their personal experiences. The students developed, elaborated, and identified problems and potential solutions. The pedagogical framing illustrated an empowering process of defining and elaborating a problem of their combined concerns, using their different knowledge. Although cooperation presented challenges, most students were able to explore and appreciate each other's perspectives when provided with a safe environment. Our experiences highlight the importance of both contextual safety and personal development as key factors in addressing power imbalances in healthcare.

Background Having online access to electronic health records (EHRs) may help patients become engaged in their care at an early age. However, little is known about adolescents using patient portals. A national survey conducted within the Nordic eHealth project NORDeHEALTH provided an important opportunity to advance our understanding of adolescent users of patient portals. The present study explored reasons for reading the EHRs, the perceived usefulness of information and functions in a patient portal and the association between frequency of use and encouragement to read the EHR. Methods Data were collected in a survey using convenience sampling, available through the Swedish online health portal during 3 weeks in January and February 2022. This study included a subset of items and only respondents aged 15-19. Demographic factors and frequencies on Likert-style questions were reported with descriptive statistics, while Fisher's exact test was used to explore differences in use frequency based on having been encouraged to read by a healthcare professional (HCP). Results Of 13 008 users who completed the survey, 218 (1.7%) were unique users aged 15-19 (females: 77.1%). One-fifth (47/218, 21.6%) had been encouraged by HCPs to read their records, and having been encouraged by HCPs was related to higher use frequency (p=0.018). All types of information were rated high on usefulness, while some functions were rated low, such as blocking specific clinical notes from HCPs and managing services for family members. The main reason for reading their health records online was out of curiosity. Conclusions Adolescents who read their records online perceive it to be useful. Encouragement by HCPs can lead to increased use of patient portals among adolescents. Findings should be considered in the future design of patient portals for adolescents., CC BY 4.0 DEED© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.Correspondence Address: J. Hagström; Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden; email: josefin.hagstrom@uu.seThis work was supported by NordForsk (grant number: 100477) and the Swedish Research Council for Health, Working Life and Welfare (FORTE) (grant number: 2020-01229).

OBJECTIVE: To describe the experiences and opinions of general practitioners (GPs) in England regarding patients having access to their full online GP health records. DESIGN: Convenience sample, online survey. PARTICIPANTS: 400 registered GPs in England. MAIN OUTCOME MEASURES: Investigators measured GPs' experiences and opinions about online record access (ORA), including patient care and their practice. RESULTS: A total of 400 GPs from all regions of England responded. A minority (130, 33%) believed ORA was a good idea. Most GPs believed a majority of patients would worry more (364, 91%) or find their GP records more confusing than helpful (338, 85%). Most GPs believed a majority of patients would find significant errors in their records (240, 60%), would better remember their care plan (280, 70%) and feel more in control of their care (243, 60%). The majority believed they will/already spend more time addressing patients' questions outside of consultations (357, 89%), that consultations will/already take significantly longer (322, 81%) and that they will be/already are less candid in their documentation (289, 72%) after ORA. Nearly two-thirds of GPs believed ORA would increase their litigation (246, 62%). CONCLUSIONS: Similar to clinicians in other countries, GPs in our sample were sceptical of ORA, believing patients would worry more and find their records more confusing than helpful. Most GPs also believed the practice would exacerbate work burdens. However, the majority of GPs in this survey also agreed there were multiple benefits to patients having online access to their primary care health records. The findings of this survey also contribute to a growing body of contrastive research from countries where ORA is advanced, demonstrating clinicians are sceptical while studies indicate patients appear to derive multiple benefits.

Patients feeling offended by reading records online is a concern among healthcare professionals, however previously published work has focused on adult patients. Here, a survey was used to explore and compare experiences of offense among adolescents (15-19 years old) and young adults (20-24 years old). Findings indicated that while the ratio of those offended did not differ between adolescents and young adults, reasons for feeling offended did., CC BY-NC 4.0 DEEDCorresponding Author: Josefin Hagström, email: josefin.hagstrom@kbh.uu.seProceedings of the 19th World Congress on Medical and Health InformaticsEditors: Jen Bichel-Findlay, Paula Otero, Philip Scott, Elaine HuesingISBN 978-1-64368-456-7 (print) | 978-1-64368-457-4 (online)

Patient-Accessible Electronic Health Records (PAEHR) is particularly controversial in mental healthcare. We aim to explore if there is any association between patients with mental health conditions and the experience of someone demanding access to their PAEHR. A chi-square test showed a significant association between group belonging and experiences of someone demanding access to the PAEHR., CC BY-NC 4.0 DEEDCorresponding Author: Annika Bärkås, email: annika.barkas@kbh.uu.se.

Introduction Parkinson's Disease (PD) is a complex neurodegenerative disease resulting in a wide range of motor and nonmotor symptoms for which the treatment regimen is often complex. People with Parkinson's (PwP) spend time daily on self-care practices including self-tracking signs and symptoms or seeking disease-specific knowledge. Research suggests self-care interventions yield promising care and health outputs for PwP, yet most research focuses on the provider perspective rather than that of those conducting the self-care. This study explores the meaning of self-care, disease-specific knowledge, and self-tracking from the perspective of PwP in Sweden. Methods Qualitative data from three data sets were analyzed and compared using qualitative content analysis: one focus group on self-care (n = 14), one free-text survey on disease-specific knowledge (n = 197) and one free-text survey on self-tracking (n = 33). Findings The analysis resulted in three categories: illness-related tasks, internal resources and external resources. Illness-related tasks describe various tasks PwP carry out in self-care, including lifestyle choices, treatments, and self-tracking. Internal resources include personal knowledge/skills as well as mindsets which could facilitate or challenge completing these tasks. Finally, external resources include other PwP, literature, clinicians and other sources of disease-specific knowledge. Self-care was found to fluctuate between beneficial and burdensome depending on such resources. Conclusions In conclusion, self-care needs to be acknowledged and discussed more often in PD and other complex conditions. Future self-care interventions should consider self-tracking and disease-specific knowledge as well as internal and external resources in their design and implementation. Patient or Public Contribution A researcher with PD was actively involved in all phases of the research: study design, data collection and analysis, and preparing the manuscript.

Background Patients’ online record access (ORA) enables patients to read and use their health data through online digital solutions. One such solution, patient-accessible electronic health records (PAEHRs) have been implemented in Estonia, Finland, Norway, and Sweden. While accumulated research has pointed to many potential benefits of ORA, its application in mental healthcare (MHC) continues to be contested. The present study aimed to describe MHC users’ overall experiences with national PAEHR services. Methods The study analysed the MHC-part of the NORDeHEALTH 2022 Patient Survey, a large-scale multi-country survey. The survey consisted of 45 questions, including demographic variables and questions related to users’ experiences with ORA. We focused on the questions concerning positive experiences (benefits), negative experiences (errors, omissions, offence), and breaches of security and privacy. Participants were included in this analysis if they reported receiving mental healthcare within the past two years. Descriptive statistics were used to summarise data, and percentages were calculated on available data. Results 6,157 respondents were included. In line with previous research, almost half (45%) reported very positive experiences with ORA. A majority in each country also reported improved trust (at least 69%) and communication (at least 71%) with healthcare providers. One-third (29.5%) reported very negative experiences with ORA. In total, half of the respondents (47.9%) found errors and a third (35.5%) found omissions in their medical documentation. One-third (34.8%) of all respondents also reported being offended by the content. When errors or omissions were identified, about half (46.5%) reported that they took no action. There seems to be differences in how patients experience errors, omissions, and missing information between the countries. A small proportion reported instances where family or others demanded access to their records (3.1%), and about one

Introduction: Little is known about factors that influence patients' choice to use physical or digital primary care. This study aimed to compare self-rated health, internet habits, and what patients deem important when choosing health care between users of physical and digital primary health care. Methods: We recruited 2,716 adults visiting one of six physical or four digital primary health care providers in Stockholm, Sweden, October 2020 to May 2021. Participants answered a questionnaire with questions about sociodemography, self-rated health, internet habits, and what they considered important when seeking care. We used logistic regression and estimated odds ratios (ORs) for choosing digital care. Results: Digital users considered themselves healthier and used the internet more, compared with physical users (p < 0.001). Competence of health care staff was the most important factor when seeking care to both physical and digital users (90% and 78%, respectively). Patients considering it important to avoid leaving home were more likely to seek digital care (OR 29.55, 95% confidence interval [CI] 12.65?69.06), while patients valuing continuity were more likely to seek physical care (OR 0.25, 95% CI 0.19?0.32). These factors were significant also when adjusting for self-rated health and sociodemographic characteristics. Conclusion: What patients considered important when seeking health care was associated with what type of care they sought. Patient preferences should be considered when planning health care to optimize resource allocation.

Patients’ online record access (ORA) is growing worldwide. In some countries, including the United States and Sweden, access is advanced with patients obtaining rapid access to their full records on the web including laboratory and test results, lists of prescribed medications, vaccinations, and even the very narrative reports written by clinicians (the latter, commonly referred to as “open notes”). In the United States, patient’s ORA is also available in a downloadable form for use with other apps. While survey studies have shown that some patients report many benefits from ORA, there remain challenges with implementation around writing clinical documentation that patients may now read. With ORA, the functionality of the record is evolving; it is no longer only an aide memoire for doctors but also a communication tool for patients. Studies suggest that clinicians are changing how they write documentation, inviting worries about accuracy and completeness. Other concerns include work burdens; while few objective studies have examined the impact of ORA on workload, some research suggests that clinicians are spending more time writing notes and answering queries related to patients’ records. Aimed at addressing some of these concerns, clinician and patient education strategies have been proposed. In this viewpoint paper, we explore these approaches and suggest another longer-term strategy: the use of generative artificial intelligence (AI) to support clinicians in documenting narrative summaries that patients will find easier to understand. Applied to narrative clinical documentation, we suggest that such approaches may significantly help preserve the accuracy of notes, strengthen writing clarity and signals of empathy and patient-centered care, and serve as a buffer against documentation work burdens. However, we also consider the current risks associated with existing generative AI. We emphasize that for this innovation to play a key role in ORA, the cocreation of cl

Patients' online record access is a worldwide phenomenon, where Sweden is one of the pioneers in actual countrywide implementation. Healthcare professionals (HCPs) have previously raised usability issues with e-health systems and proposed several solutions, yet no studies have explored PAEHRs from this perspective. The aim of this study was to describe primary HCPs' suggestions on how the Swedish online record could be improved. They (n=14) were asked what they would like to improve with the system to increase usability and usefulness for patients or for themselves. Suggestions covered expanding what patients could view, simplification of the service for both the patients and themselves, adding feedback functions, and limiting access to only signed records.

While research on the effects of patient access to health records is increasing, a basic understanding of the spread of patient-accessible electronic health records worldwide is lacking. In this survey of healthcare experts with professional and personal experience from 29 countries, we explored the state of patient online record access (ORA). We asked participants whether ORA exists in their country and which information is available through it. Experts in all polled countries reported having some national access to health records, with 6 (21%) countries providing exclusively paper-based records and 23 (79%) countries having ORA. Overview of test/lab results and prescription/medication lists were the most commonly available information. Free-text clinical notes were accessible in less than half of the surveyed countries (12, 41%). We will continue to map the state of patient ORA, focusing on traditionally underrepresented countries.

The Nordic countries are, together with the United States, forerunners in online record access (ORA), which has now become widespread. The importance of accessible and structured health data has also been highlighted by policy makers internationally. To ensure the full realization of ORA’s potential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European Union, informed by our research in a Nordic-led project that carries out the first of its kind, large-scale international investigation of patients’ ORA—NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future). We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records. In our analysis of the proposal, we have identified five key principles for ORA: (1) the right to access, (2) proxy access, (3) patient input of their own data, (4) error and omission rectification, and (5) access control. ORA implementation today is fragmented throughout Europe, and the EHDS proposal aims to ensure all European citizens have equal online access to their health data. However, we argue that in order to implement the EHDS, we need more research evidence on the key ORA principles we have identified in our analysis. Results from the NORDeHEALTH project provide some of that evidence, but we have also identified important knowledge gaps that still need further exploration., CC BY 4.0©Maria Hägglund, Anna Kharko, Annika Bärkås, Charlotte Blease, Åsa Cajander, Catherine DesRoches, Asbjørn Johansen Fagerlund, Josefin Hagström, Isto Huvila, Iiris Hörhammer, Bridget Kane, Gunnar O Klein, Eli Kristiansen, Jonas Moll, Irene Muli, Hanife Rexhepi, Sara Riggare, Peeter Ross, Isabella Scandurra, Saija Simola, Hedvig Soone, Bo Wang, Maedeh Ghorbanian Zolbin, Rose-Mharie Åhlfeldt, Sari Kujala, Monika Alise Johansen.Corresponding Author: Maria Hägglund, maria.hagglund@uu.seThis work was supported by the Citizen and Health Data Working Group in the European Federation for Medical Informatics (CHD WG, EFMI). This work was supported by NordForsk through the funding to Nordic eHealth for Patients: Benchmarking and Developing for the Future, NORDeHEALTH (project #100477), the Swedish Research Council for Health, Working Life and Welfare (FORTE) through the funding to Beyond Implementation of eHealth (project #2020-01229), the Strategic Research Council at the Academy of Finland (projects #352501 and #352503), and the Norwegian Centre for E-health Research. CB was supported by a Keane Scholar Award. The study funders played no role in the study design, data interpretation, writing of the results, or decision to submit the manuscript for publication., Nordic eHealth for Patients: Benchmarking and Developing for the Future, NORDeHEALTH

BACKGROUND: The NORDeHEALTH project studies patient-accessible electronic health records (PAEHRs) in Estonia, Finland, Norway, and Sweden. Such country comparisons require an analysis of the sociotechnical context of these services. Although sociotechnical analyses of PAEHR services have been carried out in the past, a framework specifically tailored to in-depth cross-country analysis has not been developed. OBJECTIVE: This study aims to develop and evaluate a method for a sociotechnical analysis of PAEHRs that advances a framework for sociotechnical analysis of eHealth solutions first presented by Sittig and Singh. This first article in a series presents the development of the method and a cross-country comparison of the contextual factors that enable PAEHR access and use. METHODS: The dimensions of the framework for sociotechnical analysis were thoroughly discussed and extended in a series of workshops with international stakeholders, all being eHealth researchers focusing on PAEHRs. All countries were represented in the working group to make sure that important national perspectives were covered. A spreadsheet with relevant questions related to the studied services and the various dimensions of the sociotechnical framework was constructed and distributed to the 4 participating countries, and the project participants researched various national sources to provide the relevant data for the comparisons in the 10 sociotechnical dimensions. RESULTS: In total, 3 dimensions were added to the methodology of Sittig and Singh to separate clinical content from features and functions of PAEHRs and demonstrate basic characteristics of the different countries regarding national and regional steering of health care and information and communications technology developments. The final framework contained the following dimensions: metadata; hardware and software computing infrastructure; features and functions; clinical content shared with patients; human-computer interface; peop

Background Providing secondary prevention through structured and comprehensive cardiac rehabilitation programmes to patients after a myocardial infarction (MI) reduces mortality and morbidity and improves health-related quality of life. Cardiac rehabilitation has the highest recommendation in current guidelines. While treatment target attainment rates at Swedish cardiac rehabilitation centres is among the highest in Europe, there are considerable differences in service delivery and variations in patient-level outcomes between centres. In this trial, we aim to study whether centre-level guideline adherence and patient-level outcomes across Swedish cardiac rehabilitation centres can be improved through a) regular audit and feedback of cardiac rehabilitation structure and processes through a national quality registry and b) supporting cardiac rehabilitation centres in implementing guidelines on secondary prevention. Furthermore, we aim to evaluate the implementation process and costs. Methods The study is an open-label cluster-randomized effectiveness-implementation hybrid trial including all 78 cardiac rehabilitation centres (attending to approximately 10 000 MI patients/year) that report to the SWEDEHEART registry. The centres will be randomized 1:1:1 to three clusters: 1) reporting cardiac rehabilitation structure and process variables to SWEDEHEART every six months (audit intervention) and being offered implementation support to implement guidelines on secondary prevention (implementation support intervention); 2) audit intervention only; or 3) no intervention offered. Baseline cardiac rehabilitation structure and process variables will be collected. The primary outcome is an adherence score measuring centre-level adherence to secondary prevention guidelines. Secondary outcomes include patient-level secondary prevention risk factor goal attainment at one-year after MI and major adverse coronary outcomes for up to five-years post-MI. Implementation outcomes include

Background In a growing number of countries, patients are offered access to their full online clinical records, including the narrative reports written by clinicians (the latter, referred to as “open notes”). Even in countries with mature patient online record access, access to psychotherapy notes is not mandatory. To date, no research has explored the views of psychotherapy trainees about open notes. Objective This study aimed to explore the opinions of psychotherapy trainees in Switzerland about patients’ access to psychotherapists’ free-text summaries. Methods We administered a web-based mixed methods survey to 201 psychotherapy trainees to explore their familiarity with and opinions about the impact on patients and psychotherapy practice of offering patients online access to their psychotherapy notes. Descriptive statistics were used to analyze the 42-item survey, and qualitative descriptive analysis was employed to examine written responses to four open-ended questions. Results Seventy-two (35.8%) trainees completed the survey. Quantitative results revealed mixed views about open notes. 75% agreed that, in general open notes were a good idea, and 94.1% agreed that education about open notes should be part of psychotherapy training. When considering impact on patients and psychotherapy, four themes emerged: (a) negative impact on therapy; (b) positive impact on therapy; (c) impact on patients; and (d) documentation. Students identified concerns related to increase in workload, harm to the psychotherapeutic relationship, and compromised quality of records. They also identified many potential benefits including better patient communication and informed consent processes. In describing impact on different therapy types, students believed that open notes might have differential impact depending on the psychotherapy approaches. Conclusions Sharing psychotherapy notes is not routine but is likely to expand. This mixed methods study provides timely insights into the vi

This study aimed to investigate the impact of recovery on various health aspects among olderemployees and how the different dimensions of recovery relate to health. The dimensions of recoveryinclude: psychological detachment, relaxation, mastery and control. Data were analyzed from twopublic organizations in northern Sweden, with survey responses from employees aged 55 years orolder. The methodology included factor-, mean- and regression analyses to identify the dimensions ofrecovery and understand their impact on health. The results of the study showed that psychologicaldetachment, mastery and control were positively associated with health whilst relaxation had anegative effect. Furthermore, associations were observed between health and control variables such asage, gender, education and the degree of influence in the workplace. Here, the results showed thatwomen generally reported worse health than men, a finding that is consistent with previous research.Older, highly educated individuals with high levels of influence reported better health compared toother studied groups. Respondents living together with a partner, and those that also had childrenreported better health. The study provided insights into the need for strategies when it comes topromoting health among older employees, emphasizing recovery and other factors. Limitationsincluded challenges with representativeness and difficulties in establishing causality. Further researchshould focus on gaining a deeper understanding of the complex relationships between recovery, healthand work-related factors- with a particular emphasis on investigating more organizations and sectors.

OBJECTIVES: Following the launch of ChatGPT in November 2022, interest in large language model-powered chatbots has soared with increasing focus on the clinical potential of these tools. We sought to measure general practitioners' (GPs) current use of this new generation of chatbots to assist with any aspect of clinical practice in the UK. METHODS: An online survey was distributed to a non-probability sample of GPs registered with the clinician marketing service Doctors.net.uk. The study was launched as a monthly 'omnibus survey' which has a predetermined sample size of 1000 participants. RESULTS: 531 (53%) respondents were men, 544 (54%) were 46 years or older. 20% (205) reported using generative artificial intelligence (AI) tools in clinical practice; of those who answered affirmatively and were invited to clarify further, 29% (47) reported using these tools to generate documentation after patient appointments and 28% (45) to suggest a differential diagnosis. DISCUSSION: Administered a year after ChatGPT was launched, this is the largest survey we know of conducted into doctors' use of generative AI in clinical practice. Findings suggest that GPs may derive value from these tools, particularly with administrative tasks and to support clinical reasoning. CONCLUSION: Despite a lack of guidance about these tools and unclear work policies, GPs report using generative AI to assist with their job. The medical community will need to find ways to both educate physicians and trainees and guide patients about the safe adoption of these tools.

Patient-generated health data (PGHD) is the person's health-related data collected outside the clinical environment. Integrating this data into the electronic health record (EHR) supports better patient-provider communication and shared decision-making, empowering patients to actively manage their health conditions. In this study, we investigated the essential features needed for patients and healthcare providers to effectively integrate PGHD functionality into the EHR system. Through our collaborative design approach involving healthcare professionals (HCPs) and patients, we developed a prototype and suggestion, using Estonia as a model, which is the ideal approach for collecting and integrating PGHD into the EHR.

BACKGROUND: Approaches to implementing online record access (ORA) via patient portals for minors and guardians vary internationally, as more countries continue to develop patient-accessible electronic health records (PAEHR) systems. Evidence of ORA usage and country-specific practices to allow or block minors' and guardians' access to minors' records during adolescence (i.e. access control practices) may provide a broader understanding of possible approaches and their implications for minors' confidentiality and guardian support. AIM: To describe and compare minors' and guardian proxy users' PAEHR usage in Sweden and Finland. Furthermore, to investigate the use of country-specific access control practices. METHODS: A retrospective, observational case study was conducted. Data were collected from PAEHR administration services in Sweden and Finland and proportional use was calculated based on population statistics. Descriptive statistics were used to analyze the results. RESULTS: In both Sweden and Finland, the proportion of adolescents accessing their PAEHR increased from younger to older age-groups reaching the proportion of 59.9 % in Sweden and 84.8 % in Finland in the age-group of 17-year-olds. The PAEHR access gap during early adolescence in Sweden may explain the lower proportion of users among those who enter adulthood. Around half of guardians in Finland accessed their minor children's records in 2022 (46.1 %), while Swedish guardian use was the highest in 2022 for newborn children (41.8 %), and decreased thereafter. Few, mainly guardians, applied for extended access in Sweden. In Finland, where a case-by-case approach to access control relies on healthcare professionals' (HCPs) consideration of a minor's maturity, 95.8 % of minors chose to disclose prescription information to their guardians. CONCLUSION: While age-based access control practices can hamper ORA for minors and guardians, case-by-case approach requires HCP resources and careful guidance to ensure