[{"_id":"project:6607","_type":"project","abstract":{"sv":"Projektet syftar till att utforska faktorer som påverkar implementering och användning av kollaborativ¬†e-hälsa, d v s e-hälsa som används som ett verktyg för samarbete mellan patienter och vårdpersonal, samt att föreslå och utveckla konkreta interventioner eller verktyg för att säkerställa att e-hälsolösningarna faktiskt kommer till användning. En av de mer omdiskuterade e-hälsolösningarna som har implementerats, både i Sverige och internationellt, är patienters tillgång till sin journal via nätet (Journalen), eller open notes som det brukar kallas i USA. Vi kommer att använda implementeringen av Journalen i Sverige och open notes i USA som vårt exempelfall. Vi har valt detta exempel eftersom det är en vitt spridd e-hälsotjänst som används av både vårdpersonal, patienter och anhöriga, som har varit kontroversiell och omdiskuterad, och som påverkar relationer, professionella roller, patientens roll och traditionella hierarkier och maktrelationer. Vårdgivare i USA och Sverige har implementerat patienters tillgång till sin journal på olika sätt, och faktisk användning varierar mellan olika kontexter.¬†Projektets mål är:¬†1: Att identifiera nyckelfaktorer i kontexten som påverkar implementering och användning av kollaborativ e-hälsa i allmänhet och patienters tillgång till sin journal i synnerhet¬†2: Att utforska etiska faktorer och faktorer relaterade till professionella roller och vårdrelationen som kan påverka implementering och användning av¬†kollaborativ e-hälsa i allmänhet och patienters tillgång till sin journal i synnerhet¬† ¬†3: Att designa och testa interventioner för att underlätta implementering och långsiktig användning av patienters tillgång till sin journal som tar hänsyn till kontextuella och etiska faktorer¬†4: Att anpassa befintliga teorier för implementering och teknikanvändning till kollaborativ e-hälsaAktionsforskning kommer att användas i nära samarbete med patienter, vårdpersonal och andra intressenter.","en":"The main objective of this research is to explore key factors that will affect implementation and adoption of collaborative eHealth, that is eHealth that is used by both patients and healthcare professionals, and to propose concrete interventions or tools to ensure widespread adoption of such eHealth. One of the more discussed collaborative eHealth tools that have been implemented in recent years, both in Sweden and internationally, is the patient accessible electronic health record (PAEHR), or open notes as referred to in the United States. We will use the implementation of PAEHRs or open notes in the United States and in Sweden as our example case. We choose this because it is a widespread type of eHealth system, it is used by both healthcare professionals, patients, and family caregivers, it has been controversial and debated, and it affects power hierarchies, professional and patient roles. Healthcare organizations (in the United States) and regions (in Sweden) have taken different approaches to implement the innovation, and adoption and actual use still vary widely between contexts.¬†¬†The project’s goals are:1: To identify key contextual factors that influence implementation and adoption of collaborative eHealth in general and specifically PAEHR/open notes¬†2: To explore ethical factors and factors related to professional roles and patient-clinician relationship that influence implementation and adoption of collaborative eHealth in general and specifically PAEHR/open notes¬†¬†3: To design and test interventions to facilitate implementation and adoption of PAEHR/open notes addressing contextual and ethical factors4: To adapt existing implementation and adoption theories to the context of collaborative eHealth.A participatory action research approach will be used in close collaboration with patients, healthcare professionals and other stakeholders."},"project_id":"2020-01229_Forte","identifier_short":"2020-01229","dates":{"start_date":"2020-07-01","end_date":"2024-06-30"},"organizations":[{"funding":[{"_id":93,"id":"202100-5240","sv":"Forte, Forskningsrådet för hälsa, arbetsliv och välfärd","en":"Forte, Swedish Research Council for Health, Working Life and Welfare"}]},{"coordinating":[{"_id":978,"id":"202100-2932","sv":"Uppsala universitet","en":"Uppsala University"}]}],"people":[{"project_leaders":[{"_id":"authority-person:10989","orcid":"0000-0002-6839-3651","name":"Hägglund, Maria","role":"principal_investigator","affiliation":[{"_id":978,"id":"202100-2932","sv":"Uppsala universitet","en":"Uppsala University"}]}]},{"other_personnel":[]}],"tags":[{"_id":11511,"id":"10202","sv":"Systemvetenskap, informationssystem och informatik","en":"Information Systems"}],"titles":{"sv":"Bortom implementering av e-hälsa","en":"Beyond Implementation of eHealth"},"total_funding":"5800000","type_of_awards":{"sv":"","en":""},"publications":[{"id":"diva2:1986763","type":"article-journal","status":"Published","issued":{"date-parts":[[2025]]},"title":"Generative artificial intelligence in medicine : a mixed-methods survey of UK general practitioners","language":"eng","author":[{"family":"Kharko","given":"Anna","ORCID":"0000-0003-0908-6173","localId":"annkh217","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Centre for Primary Care and Health Services Research, The University of Manchester, Manchester, UK"}]},{"family":"Locher","given":"Cosima"},{"family":"Torous","given":"John"},{"family":"Rosch","given":"Sophie Anna"},{"family":"Hägglund","given":"Maria","ORCID":"0000-0002-6839-3651","localId":"mha05791","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"}]},{"family":"Gaab","given":"Jens"},{"family":"McMillan","given":"Brian"},{"family":"Sundemo","given":"David"},{"family":"Mandl","given":"Kenneth D."},{"family":"Blease","given":"Charlotte","ORCID":"0000-0002-0205-1165","localId":"chabl597","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Department of Psychiatry, Harvard Medical School, Boston, Massachusetts, USA"}]}],"abstract":"<b>Objective</b> To explore the opinions of general practitioners (GPs) in the UK about the use of generative artificial intelligence (AI) tools in primary care.<b>Methods and analysis</b> At the beginning of 2024, using a convenience sample, we administered an online mixed-methods survey to registered GPs currently working in the UK.<b>Results</b> A total of 1006 GPs responded, with 53% being male and 54% over 46 years old. One-fifth of GPs reported having used AI for clinical practice, with male doctors and those in bigger cities being more likely to have used it. 80% of respondents expressed a need for more training in understanding these tools. GPs at least somewhat agreed AI would improve documentation (59%) and patient information gathering (56%). 55% felt AI could increase inequities and 54% saw potential for patient harm, but 47% believed it could enhance healthcare efficiency. GPs who used these tools were significantly more optimistic about the scope for generative AI in improving clinical tasks. One-third of GPs left comments that were classified into four major themes: (1) lack of familiarity and understanding with AI, (2) role of AI in clinical practice, (3) concerns about AI and (4) AI and the future of healthcare.<b>Conclusions</b> This study highlights UK GPs’ developing perspectives on generative AI in clinical practice, emphasising the need for more training. Many GPs reported a lack of knowledge and experience with this technology, although a portion already used non-medical grade technology for clinical tasks, with the risks that this entails.","DOI":"10.1136/bmjdhai-2025-000051","NBN":"urn:nbn:se:uu:diva-564433","issue":"1","volume":"1","number":"e000051","container-title":"BMJ Digital Health & AI","ISSN":"3049-575X","publisher":"BMJ Publishing Group Ltd","published":[{"raw":"2025-08-03T22:10:00.000+02:00"}],"created":[{"raw":"2025-08-03T22:10:32.159+02:00"}],"updated":[{"raw":"2025-11-20T13:09:52.197+01:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-564433"},{"id":"diva2:1912468","type":"article-journal","status":"Published","issued":{"date-parts":[[2025]]},"title":"Pediatric oncology healthcare professionals’ attitudes to and awareness of regulations for minors’ and guardians’ online record access : A mixed-methods study in Sweden","language":"eng","author":[{"family":"Hagström","given":"Josefin","ORCID":"0000-0003-2835-0259","localId":"josha635","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"}]},{"family":"Blease","given":"Charlotte","ORCID":"0000-0002-0205-1165","localId":"chabl597","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Digital Psychiatry, Department of Psychiatry, Beth Israel Deaconess Medical Center, Boston, MA, USA"}]},{"family":"Harila","given":"Arja","ORCID":"0000-0003-2767-5828","localId":"arjha456","affiliation":[{"id":"886103","name":"Uppsala universitet, Barnonkologisk och neurologisk forskning"}]},{"family":"Scandurra","given":"Isabella","ORCID":"0000-0002-2597-1079","localId":"isabscan","affiliation":[{"name":"Centre for Empirical Research on Information Systems (CERIS), Informatics, School of Business, Örebro University, Örebro, Sweden"}]},{"family":"Lähteenmäki","given":"Päivi","affiliation":[{"name":"Department of Women's and Children's Health, Karolinska Institute, Stockholm, Sweden; Department of Pediatric and Adolescent Medicine, Turku University Hospital, Turku, Finland"}]},{"family":"Hägglund","given":"Maria","ORCID":"0000-0002-6839-3651","localId":"mha05791","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Medtech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden"}]}],"abstract":"<b>Background</b>Healthcare providers and policymakers worldwide differ in their provision of access to adolescentpatients’ electronic health records (EHR). The regulatory framework in Sweden restricting both guardians’ andadolescents’ online record access (ORA) has during recent years received criticism. The aim was to quantitativelyand qualitatively, explore attitudes about ORA and perceptions about ORA regulations among pediatric oncologyhealthcare professionals (HCPs) in Sweden.<b>Methods</b>A convergent mixed-methods design (QUAL, quan) was used, consisting of a survey study (N = 95) andsemi-structured individual interviews (N = 13). Physicians and nurses in pediatric oncology were recruited in clinicsface-to-face or via staff e-mail. Descriptive statistics were used to present quantitative survey results. Interviews wererecorded, transcribed, and analyzed using content analysis.<b>Results</b>A majority of participants (72%) were critical of the access restrictions but lacked knowledge about accessextensions, with more than 60% unaware of application procedures. Five themes emerged regarding both perceivedbenefits and risks of ORA. Examples of benefits included adolescent empowerment, parental support, and improvedpartnership; risks included an increased emotional distress and confusion among young patients and their guardians,increased workload for HCPs, and threats to adolescent confidentiality. An additional five identified themes capturedHCPs’ views on regulations and included uncertainty, variation among adolescents, and the need to balance parentalsupport and adolescent privacy.<b>Conclusions</b>Findings indicate lacking knowledge about ORA regulations and little incentive for HCPs to promoteits use. While risks of ORA were often directly experienced and concerned confidentiality breaches and difficultieswith EHR documentation, benefits tended to be anticipatory and related to patient or parent experiences. Still, HCPsshowed limited support for ORA restrictions during adolescence. To ensure safe and effective ORA use, HCPs needclearer guidance and support.","DOI":"10.1186/s12913-025-13697-3","PMID":"41310673","ScopusId":"2-s2.0-105023545277","NBN":"urn:nbn:se:uu:diva-542491","issue":"1","volume":"25","number":"1562","container-title":"BMC Health Services Research","ISSN":"1472-6963","keyword":"healthcare professionals (HCPs); oncology; adolescents; adolescent health; Patient Accessible Electronic Health Record (PAEHR); Electronic Health Record (EHR); patient portal; survey; ehealth; interviews","publisher":"BioMed Central (BMC)","published":[{"raw":"2024-11-12T11:19:00.000+01:00"}],"created":[{"raw":"2024-11-12T11:19:42.603+01:00"}],"updated":[{"raw":"2026-05-07T13:59:50.291+02:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-542491"},{"id":"diva2:1931852","type":"article-journal","status":"Published","issued":{"date-parts":[[2025]]},"title":"Perspectives on Swedish Regulations for Online Record Access Among Adolescents With Serious Health Issues and Their Parents : Mixed Methods Study","language":"eng","author":[{"family":"Hagström","given":"Josefin","ORCID":"0000-0003-2835-0259","localId":"josha635","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"}]},{"family":"Blease","given":"Charlotte","ORCID":"0000-0002-0205-1165","localId":"chabl597","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Digital Psychiatry, Department of Psychiatry, Beth Israel Deaconess Medical Center, Boston, United States"}]},{"family":"Harila","given":"Arja","ORCID":"0000-0003-2767-5828","localId":"arjha456","affiliation":[{"id":"886103","name":"Uppsala universitet, Barnonkologisk och neurologisk forskning"}]},{"family":"Lähteenmäki","given":"Päivi","affiliation":[{"name":"Department of Pediatrics and Adolescent Medicine, Turku University, Turku University Hospital, Turku, Finland; Pediatric Oncology and Pediatric Surgery, Department of Women's and Children's Health, Karolinska Institute, Stockholm, Sweden"}]},{"family":"Scandurra","given":"Isabella","affiliation":[{"name":"Informatics, School of Business, Örebro University, Örebro, Sweden"}]},{"family":"Hägglund","given":"Maria","ORCID":"0000-0002-6839-3651","localId":"mha05791","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"MedTech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden"}]}],"abstract":"Background:With the increasing implementation of patient online record access (ORA), various approaches to access to minors’ electronic health records have been adopted globally. In Sweden, the current regulatory framework restricts ORA for minors and their guardians when the minor is aged between 13 and 15 years. Families of adolescents with complex health care needs often desire health information to manage their child’s care and involve them in their care. However, the perspectives of adolescents with serious health issues and their parents have not been studied.Objective:This study aims to qualitatively and quantitatively investigate the perceived benefits and risks of ORA and the awareness of and views on ORA regulations among adolescents with serious health issues and their parents in Sweden.Methods:We used a convergent mixed methods (qualitative and quantitative) design, consisting of a survey and semistructured individual interviews with adolescents with serious health issues (aged 13-18 y) and their parents. Participants were recruited via social media and in clinics. Quantitative data were presented descriptively. Interviews were audio recorded, transcribed, and analyzed using inductive thematic content analysis.Results:The survey population included 88 individuals (adolescents: n=31, 35%; parents: n=57, 65%). Interviews were completed by 8 (26%) of the 31 adolescents and 17 (30%) of the 57 parents. The mean age of the surveyed adolescents was 16 (SD 1.458) years, and most of the parents (29/57, 51%) were aged 45 to 54 years. The surveys indicated that most of the parents (51/56, 91%) were critical of the access gap, and most of the adolescents (20/31, 65%) were unaware of the age at which they could gain access. In the interviews, adolescents and parents identified benefits related to ORA that were categorized into 6 themes (empowering adolescents, improved emotional state, enhanced documentation accuracy, improved partnership and communication, supported parental care management, and better prepared for appointments) and risks related to ORA that were categorized into 4 themes (emotional distress and confusion, threatened confidentiality, increased burden, and low usability). Adolescents’ and parents’ views on ORA regulations were categorized into 3 themes (challenges of the access gap, balancing respect for autonomy and support, and suggested regulatory change).Conclusions:In Sweden, ORA regulations and a lack of available information cause significant inconvenience for adolescents with serious health issues and their parents. Views on access age limits differed, with adolescents expressing their perceived need for independent access, while parents exhibited concerns about adolescents having ORA. The findings indicated the importance of increased education, dialogue, and flexibility to uphold confidential and consistent delivery of adolescent health care. Further exploration is needed to understand the experiences of adolescents and parents in diverse clinical and geographic contexts, as well as the perspectives of pediatric health care professionals on restrictive ORA regulations.","DOI":"10.2196/63270","PMID":"39869908","ScopusId":"2-s2.0-85217667932","NBN":"urn:nbn:se:uu:diva-548650","volume":"8","number":"e63270","container-title":"JMIR Pediatrics and Parenting","ISSN":"2561-6722","keyword":"health care professionals; adolescent health; patient-accessible electronic health record; electronic health record; patient portal; survey; eHealth; interviews","publisher":"JMIR Publications","note":"Title in the list of papers of Josefin Hagström's thesis: Adolescents' and Parents' Perspectives on Online Record Access Regulations in Sweden: A Mixed-Methods Study","published":[{"raw":"2025-01-28T07:48:00.000+01:00"}],"created":[{"raw":"2025-01-28T07:48:29.278+01:00"}],"updated":[{"raw":"2026-04-23T14:05:27.372+02:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-548650"},{"id":"diva2:1883612","type":"article-journal","status":"Published","issued":{"date-parts":[[2024]]},"title":"A Nordic Perspective on Patient Online Record Access and the European Health Data Space","language":"eng","author":[{"family":"Hägglund","given":"Maria","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden"}]},{"family":"Kharko","given":"Anna","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; School of Psychology, Faculty of Health, University of Plymouth, United Kingdom"}]},{"family":"Bärkås","given":"Annika","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden"}]},{"family":"Blease","given":"Charlotte","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Division of General Medicine, Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States"}]},{"family":"Cajander","given":"Åsa","affiliation":[{"name":"Department of Information Technology, Uppsala University, Sweden"}]},{"family":"DesRoches","given":"Catherine","affiliation":[{"name":"Division of General Medicine, Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States"}]},{"family":"Fagerlund","given":"Asbjørn Johansen","affiliation":[{"name":"Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway"}]},{"family":"Hagström","given":"Josefin","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden"}]},{"family":"Huvila","given":"Isto","affiliation":[{"name":"Department of ALM, Uppsala University, Sweden"}]},{"family":"Hörhammer","given":"Iiris","affiliation":[{"name":"Department of Computer Science, Aalto University, Espoo, Finland"}]},{"family":"Kane","given":"Bridget","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Business School, Karlstad University, Sweden"}]},{"family":"Klein","given":"Gunnar O.","affiliation":[{"name":"Centre for Empirical Research on Information Systems, School of Business, Örebro University, Sweden"}]},{"family":"Kristiansen","given":"Eli","affiliation":[{"name":"Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway"}]},{"family":"Moll","given":"Jonas","affiliation":[{"name":"Centre for Empirical Research on Information Systems, School of Business, Örebro University, Sweden"}]},{"family":"Muli","given":"Irene","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden"}]},{"family":"Rexhepi","given":"Hanife","ORCID":"0000-0001-8957-9853","localId":"krah","affiliation":[{"id":"14650","name":"Högskolan i Skövde, Institutionen för informationsteknologi"},{"id":"883252","name":"Högskolan i Skövde, Forskningsmiljön Informationsteknologi"}]},{"family":"Riggare","given":"Sara","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden"}]},{"family":"Ross","given":"Peeter","affiliation":[{"name":"E-Medicine Centre, Department of Health Technologies, Tallinn University of Technology, Estonia ; Research Department, East Tallinn Central Hospital, Estonia"}]},{"family":"Scandurra","given":"Isabella","affiliation":[{"name":"Centre for Empirical Research on Information Systems, School of Business, Örebro University, Sweden"}]},{"family":"Simola","given":"Saija","affiliation":[{"name":"Department of Computer Science, Aalto University, Espoo, Finland"}]},{"family":"Soone","given":"Hedvig","affiliation":[{"name":"E-Medicine Centre, Department of Health Technologies, Tallinn University of Technology, Estonia"}]},{"family":"Wang","given":"Bo","affiliation":[{"name":"Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway"}]},{"family":"Zolbin","given":"Maedeh Ghorbanian","affiliation":[{"name":"Department of Computer Science, Aalto University, Espoo, Finland"}]},{"family":"Åhlfeldt","given":"Rose-Mharie","ORCID":"0000-0002-8607-948X","localId":"ahlo","affiliation":[{"id":"14650","name":"Högskolan i Skövde, Institutionen för informationsteknologi"},{"id":"883252","name":"Högskolan i Skövde, Forskningsmiljön Informationsteknologi"}]},{"family":"Kujala","given":"Sari","affiliation":[{"name":"Department of Computer Science, Aalto University, Espoo, Finland"}]},{"family":"Johansen","given":"Monika Alise","affiliation":[{"name":"Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway"}]}],"abstract":"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.","DOI":"10.2196/49084","PMID":"38935430","ScopusId":"2-s2.0-85197143113","NBN":"urn:nbn:se:his:diva-24348","issue":"1","volume":"26","number":"e49084","container-title":"Journal of Medical Internet Research","ISSN":"1438-8871","keyword":"digital health; EHR; electronic health records; European Health Data Space; health care; open notes; patient access; patient portals; patients’ online record access; Europe; European Union; Humans; Scandinavian and Nordic Countries; article; benchmarking; electronic health record; European; health data; human; knowledge gap; medical record; telehealth; United States; Scandinavia","publisher":"JMIR Publications","note":"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.  ","published":[{"raw":"2024-07-11T09:05:00.000+02:00"}],"created":[{"raw":"2024-07-11T09:05:16.078+02:00"}],"updated":[{"raw":"2025-09-29T17:49:10.821+02:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:his:diva-24348"},{"id":"diva2:1843810","type":"article-journal","status":"Published","issued":{"date-parts":[[2024]]},"title":"Adolescents' reasons for accessing their health records online, perceived usefulness and experienced provider encouragement : a national survey in Sweden","language":"eng","author":[{"family":"Hagström","given":"Josefin","ORCID":"0000-0003-2835-0259","localId":"josha635","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"MedTech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden"},{"id":"885357","name":"Uppsala universitet, Hälsovetenskap och e-hälsa"}]},{"family":"Blease","given":"Charlotte","ORCID":"0000-0002-0205-1165","localId":"chabl597","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, USA"}]},{"family":"Scandurra","given":"Isabella"},{"family":"Moll","given":"Jonas"},{"family":"Cajander","given":"Åsa","ORCID":"0000-0001-7472-2215","localId":"ascaj168","affiliation":[{"id":"7719","name":"Uppsala universitet, Bildanalys och människa-datorinteraktion"},{"id":"884051","name":"Uppsala universitet, Datavetenskapens didaktik"},{"id":"887401","name":"Uppsala universitet, Avdelningen Vi3"}]},{"family":"Rexhepi","given":"Hanife"},{"family":"Hägglund","given":"Maria","ORCID":"0000-0002-6839-3651","localId":"mha05791","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"MedTech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden"}]}],"abstract":"<b>Background</b> 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.<b>Methods</b> 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).<b>Results</b> 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.<b>Conclusions</b> 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.","DOI":"10.1136/bmjpo-2023-002258","PMID":"38460965","NBN":"urn:nbn:se:uu:diva-524864","issue":"1","volume":"8","number":"e002258","container-title":"BMJ Paediatrics Open","ISSN":"2399-9772","publisher":"BMJ Publishing Group Ltd","published":[{"raw":"2024-03-12T09:46:00.000+01:00"}],"created":[{"raw":"2024-03-12T09:46:26.101+01:00"}],"updated":[{"raw":"2025-01-09T11:03:45.951+01:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-524864"},{"id":"diva2:1834444","type":"article-journal","status":"Published","issued":{"date-parts":[[2024]]},"title":"Experiences and opinions of general practitioners with patient online record access : an online survey in England","language":"eng","author":[{"family":"Blease","given":"Charlotte","ORCID":"0000-0002-0205-1165","localId":"chabl597","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, USA"}]},{"family":"Kharko","given":"Anna","ORCID":"0000-0003-0908-6173","localId":"annkh217","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Faculty of Health, University of Plymouth, Plymouth, UK"}]},{"family":"Dong","given":"Zhiyong"},{"family":"Jones","given":"Ray B"},{"family":"Davidge","given":"Gail"},{"family":"Hägglund","given":"Maria","ORCID":"0000-0002-6839-3651","localId":"mha05791","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Medtech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden"}]},{"family":"Turner","given":"Andrew"},{"family":"DesRoches","given":"Catherine"},{"family":"McMillan","given":"Brian"}],"abstract":"<b>OBJECTIVE:</b> To describe the experiences and opinions of general practitioners (GPs) in England regarding patients having access to their full online GP health records.<b>DESIGN:</b> Convenience sample, online survey.<b>PARTICIPANTS:</b> 400 registered GPs in England.<b>MAIN OUTCOME MEASURES:</b> Investigators measured GPs' experiences and opinions about online record access (ORA), including patient care and their practice.<b>RESULTS:</b> 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%).<b>CONCLUSIONS:</b> 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.","DOI":"10.1136/bmjopen-2023-078158","PMID":"38302414","NBN":"urn:nbn:se:uu:diva-522250","issue":"1","volume":"14","number":"e078158","container-title":"BMJ Open","ISSN":"2044-6055","keyword":"Electronic Health Records; Patients; Surveys and Questionnaires","publisher":"BMJ Publishing Group Ltd","published":[{"raw":"2024-02-04T19:07:00.000+01:00"}],"created":[{"raw":"2024-02-04T19:07:14.426+01:00"}],"updated":[{"raw":"2024-08-16T12:49:06.712+02:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-522250"},{"id":"diva2:1883614","type":"article-journal","status":"Published","issued":{"date-parts":[[2024]]},"title":"Experiences from patients in mental healthcare accessing their electronic health records : results from a cross-national survey in Estonia, Finland, Norway, and Sweden","language":"eng","author":[{"family":"Fagerlund","given":"Asbjørn Johansen","affiliation":[{"name":"Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway"}]},{"family":"Bärkås","given":"Annika","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women’s and Children’s Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden"}]},{"family":"Kharko","given":"Anna","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women’s and Children’s Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden ; Faculty of Health, University of Plymouth, United Kingdom"}]},{"family":"Blease","given":"C. R.","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women’s and Children’s Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden ; Digital Psychiatry, Dept of Psychiatry, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States"}]},{"family":"Hagström","given":"Josefin","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women’s and Children’s Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden"}]},{"family":"Huvila","given":"Isto","affiliation":[{"name":"Department of ALM, Uppsala University, Sweden"}]},{"family":"Hörhammer","given":"Iiris","affiliation":[{"name":"Department of Computer Science, Aalto University, Espoo, Finland"}]},{"family":"Kane","given":"B.","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women’s and Children’s Health, Uppsala University, Sweden ; Business School, Karlstad University, Sweden ; Centre for Health Policy and Management, Trinity College Dublin, Ireland"}]},{"family":"Kristiansen","given":"E.","affiliation":[{"name":"Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway"}]},{"family":"Kujala","given":"Sari","affiliation":[{"name":"Department of Computer Science, Aalto University, Espoo, Finland"}]},{"family":"Moll","given":"Jonas","affiliation":[{"name":"Centre for Empirical Research on Information systems, School of Business, Örebro University, Sweden"}]},{"family":"Rexhepi","given":"Hanife","ORCID":"0000-0001-8957-9853","localId":"krah","affiliation":[{"id":"14650","name":"Högskolan i Skövde, Institutionen för informationsteknologi"},{"id":"883252","name":"Högskolan i Skövde, Forskningsmiljön Informationsteknologi"}]},{"family":"Scandurra","given":"Isabella","affiliation":[{"name":"Centre for Empirical Research on Information systems, School of Business, Örebro University, Sweden"}]},{"family":"Simola","given":"Saija","affiliation":[{"name":"Department of Computer Science, Aalto University, Espoo, Finland"}]},{"family":"Soone","given":"Hedvig","affiliation":[{"name":"E-Medicine Centre, Department of Health Technologies, Tallinn University of Technology, Estonia"}]},{"family":"Wang","given":"B.","affiliation":[{"name":"Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway"}]},{"family":"Åhlfeldt","given":"Rose-Mharie","ORCID":"0000-0002-8607-948X","localId":"ahlo","affiliation":[{"id":"14650","name":"Högskolan i Skövde, Institutionen för informationsteknologi"},{"id":"883252","name":"Högskolan i Skövde, Forskningsmiljön Informationsteknologi"}]},{"family":"Hägglund","given":"M.","affiliation":[{"name":"Participatory eHealth and Health Data Research Group, Department of Women’s and Children’s Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden"}]},{"family":"Johansen","given":"M. A.","affiliation":[{"name":"Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway"}]}],"abstract":"<b>Background</b>: 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. <b>Methods</b>: 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. <b>Results</b>: 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 in ten (10.7%) noted that unauthorised individuals had seen their health information. <b>Conclusions</b>: Overall, MHC patients reported more positive experiences than negative, but a large portion of respondents reported problems with the content of the PAEHR. Further research on best practice in implementation of ORA in MHC is therefore needed, to ensure that all patients may reap the benefits while limiting potential negative consequences. ","DOI":"10.1186/s12888-024-05916-8","PMID":"38956493","ScopusId":"2-s2.0-85197430005","NBN":"urn:nbn:se:his:diva-24347","issue":"1","volume":"24","number":"481","container-title":"BMC Psychiatry","ISSN":"1471-244X","keyword":"EHRs; Electronic health records; Mental healthcare; Online record access; ORA; PAEHR; Patient-accessible electronic health records; adult; article; best practice; controlled study; electronic health record; Estonia; Finland; health care personnel; human; major clinical study; major histocompatibility complex; male; medical documentation; medical information; Norway; privacy; Sweden","publisher":"BioMed Central (BMC)","note":"CC BY 4.0 © The Author(s) 2024Correspondence Address: A. Bärkås; Participatory eHealth and Health Data Research Group, Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden; email: annika.barkas@kbh.uu.se; CODEN: BPMSCThis 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 (Project #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, nor decision to submit the manuscript for publication. Open access funding provided by Uppsala University.","published":[{"raw":"2024-07-11T09:12:00.000+02:00"}],"created":[{"raw":"2024-07-11T09:12:47.728+02:00"}],"updated":[{"raw":"2025-09-29T17:49:08.321+02:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:his:diva-24347"},{"id":"diva2:1856099","type":"article-journal","status":"Published","issued":{"date-parts":[[2024]]},"title":"Minors' and guardian access to and use of a national patient portal : A retrospective comparative case study of Sweden and Finland","language":"eng","author":[{"family":"Hagström","given":"Josefin","ORCID":"0000-0003-2835-0259","localId":"josha635","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"MedTech Science & Innovation Centre, Uppsala University Hospital, 751 85 Uppsala, Sweden"}]},{"family":"Hägglund","given":"Maria","ORCID":"0000-0002-6839-3651","localId":"mha05791","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"MedTech Science & Innovation Centre, Uppsala University Hospital, 751 85 Uppsala, Sweden"}]},{"family":"Holmroos","given":"Mari"},{"family":"Lähteenmäki","given":"Päivi"},{"family":"Hörhammer","given":"Iiris"}],"abstract":"<b>BACKGROUND:</b> 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.<b>AIM:</b> 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.<b>METHODS:</b> 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.<b>RESULTS:</b> 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.<b>CONCLUSION:</b> 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 equality between patients. Guardians primarily access minors' records during early childhood and adolescents show willingness to share their PAEHR with parents.","DOI":"10.1016/j.ijmedinf.2024.105465","PMID":"38692233","ScopusId":"2-s2.0-85191743025","NBN":"urn:nbn:se:uu:diva-527698","volume":"187","number":"105465","container-title":"International Journal of Medical Informatics","ISSN":"1872-8243","keyword":"Adolescent health; Case study; International comparison; Patient Accessible Electronic Health Record (PAEHR); Patient portal; Usage","publisher":"Elsevier","published":[{"raw":"2024-05-06T06:36:00.000+02:00"}],"created":[{"raw":"2024-05-06T06:36:51.461+02:00"}],"updated":[{"raw":"2025-02-20T16:06:45.868+01:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-527698"},{"id":"diva2:1847752","type":"article-journal","status":"Published","issued":{"date-parts":[[2024]]},"title":"Open notes in psychotherapy : An exploratory mixed methods survey of psychotherapy students in Switzerland","language":"eng","author":[{"family":"Kharko","given":"Anna","ORCID":"0000-0003-0908-6173","localId":"annkh217","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Faculty of Health, University of Plymouth, Plymouth, UK"}]},{"family":"Buergler","given":"Sarah"},{"family":"Bärkås","given":"Annika","ORCID":"0000-0002-1209-7714","localId":"annba987","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"}]},{"family":"Hägglund","given":"Maria","ORCID":"0000-0002-6839-3651","localId":"mha05791","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"}]},{"family":"Gaab","given":"Jens"},{"family":"Johansen Fagerlund","given":"Asbjørn"},{"family":"Locher","given":"Cosima"},{"family":"Blease","given":"Charlotte","ORCID":"0000-0002-0205-1165","localId":"chabl597","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Department of General Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Uppsala, Sweden"}]}],"abstract":"BackgroundIn 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.ObjectiveThis study aimed to explore the opinions of psychotherapy trainees in Switzerland about patients’ access to psychotherapists’ free-text summaries.MethodsWe 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.ResultsSeventy-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.ConclusionsSharing psychotherapy notes is not routine but is likely to expand. This mixed methods study provides timely insights into the views of psychotherapy trainees regarding the impact of open notes on patient care and psychotherapy practice.","DOI":"10.1177/20552076241242772","PMID":"38559581","NBN":"urn:nbn:se:uu:diva-525779","volume":"10","container-title":"Digital Health","ISSN":"2055-2076","keyword":"Open notes; online record access; patient-centered care; psychotherapy; survey; qualitative survey; clinical psychology; electronic health records; healthcare ethics; informed consent; autonomy","publisher":"Sage Publications","published":[{"raw":"2024-03-29T08:35:00.000+01:00"}],"created":[{"raw":"2024-03-29T08:35:29.827+01:00"}],"updated":[{"raw":"2024-04-15T10:42:56.300+02:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-525779"},{"id":"diva2:1892624","type":"article-journal","status":"Published","issued":{"date-parts":[[2024]]},"title":"Sociotechnical Cross-Country Analysis of Contextual Factors That Impact Patients' Access to Electronic Health Records in 4 European Countries : Framework Evaluation Study","language":"eng","author":[{"family":"Moll","given":"Jonas"},{"family":"Scandurra","given":"Isabella"},{"family":"Bärkås","given":"Annika","ORCID":"0000-0002-1209-7714","localId":"annba987","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Medtech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden"}]},{"family":"Blease","given":"Charlotte","ORCID":"0000-0002-0205-1165","localId":"chabl597","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Digital Psychiatry, Department of Psychiatry Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States"}]},{"family":"Hägglund","given":"Maria","ORCID":"0000-0002-6839-3651","localId":"mha05791","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Medtech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden"}]},{"family":"Hörhammer","given":"Iiris"},{"family":"Kane","given":"Bridget","ORCID":"0000-0003-3211-6529","localId":"brika148","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"Karlstad University Business School, Karlstad, Sweden"}]},{"family":"Kristiansen","given":"Eli"},{"family":"Ross","given":"Peeter"},{"family":"Åhlfeldt","given":"Rose-Mharie"},{"family":"Klein","given":"Gunnar O."}],"abstract":"<b>BACKGROUND:</b> 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.<b>OBJECTIVE:</b> 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.<b>METHODS:</b> 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.<b>RESULTS:</b> 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; people; workflow and communication; the health care organization's internal policies, procedures, and culture; national rules, regulations, and incentives; system measurement and monitoring; and health care system context. The dimensions added during the study mostly concerned background information needed for cross-country comparisons in particular. Several similarities were identified among the compared countries, especially regarding hardware and software computing infrastructure. All countries had, for example, one national access point, and patients are provided a PAEHR automatically. Most of the differences could be identified in the <i>health care system context</i> dimension. One important difference concerned the governing of information and communications technology development, where different levels (state, region, and municipality) were responsible in different countries.<b>CONCLUSIONS:</b> This is the first large-scale international sociotechnical analysis of services for patients to access their electronic health records; this study compared services in Estonia, Finland, Norway, and Sweden. A methodology for such an analysis was developed and is presented to enable comparison studies in other national contexts to enable future implementations and evaluations of PAEHRs.","DOI":"10.2196/55752","PMID":"39186760","NBN":"urn:nbn:se:uu:diva-537118","volume":"26","number":"e55752","container-title":"Journal of Medical Internet Research","ISSN":"1438-8871","keyword":"EHR; electronic health record; health data; national survey; patient access; patient portal; patient-accessible electronic health record; sociotechnical analysis; web-based medical record; web-based record access","publisher":"JMIR Publications","published":[{"raw":"2024-08-27T12:46:00.000+02:00"}],"created":[{"raw":"2024-08-27T12:46:27.789+02:00"}],"updated":[{"raw":"2024-09-24T11:32:03.641+02:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-537118"},{"id":"diva2:1809556","type":"article-journal","status":"Published","issued":{"date-parts":[[2023]]},"title":"Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients : Results from a Nationwide Survey in Sweden","language":"eng","author":[{"family":"Bärkås","given":"Annika","ORCID":"0000-0002-1209-7714","localId":"annba987","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"MedTech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden"}]},{"family":"Kharko","given":"Anna","ORCID":"0000-0003-0908-6173","localId":"annkh217","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"MedTech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden; Faculty of Health, University of Plymouth, Plymouth, United Kingdom"}]},{"family":"Blease","given":"Charlotte","ORCID":"0000-0002-0205-1165","localId":"chabl597","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"MedTech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden; Division of General Medicine, Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States"}]},{"family":"Cajander","given":"Åsa","ORCID":"0000-0001-7472-2215","localId":"ascaj168","affiliation":[{"id":"7719","name":"Uppsala universitet, Bildanalys och människa-datorinteraktion"},{"id":"887401","name":"Uppsala universitet, Avdelningen Vi3"}]},{"family":"Johansen Fagerlund","given":"Asbjørn"},{"family":"Huvila","given":"Isto","ORCID":"0000-0001-9196-2106","localId":"isthu357","affiliation":[{"id":"1182","name":"Uppsala universitet, Institutionen för ABM"}]},{"family":"Johansen","given":"Monika Alise"},{"family":"Kane","given":"Bridget"},{"family":"Kujala","given":"Sari"},{"family":"Moll","given":"Jonas","ORCID":"0000-0002-4772-4730","localId":"jonmo359","affiliation":[{"name":"Centre for Empirical Research on Information Systems, School of Business, Örebro University, Örebro, Sweden"}]},{"family":"Rexhepi","given":"Hanife"},{"family":"Scandurra","given":"Isabella","ORCID":"0000-0002-2597-1079","localId":"isabscan","affiliation":[{"name":"Centre for Empirical Research on Information Systems, School of Business, Örebro University, Örebro, Sweden"}]},{"family":"Wang","given":"Bo"},{"family":"Hägglund","given":"Maria","ORCID":"0000-0002-6839-3651","localId":"mha05791","affiliation":[{"id":"888500","name":"Uppsala universitet, E-hälsa och hälsodata"},{"name":"MedTech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden"}]}],"abstract":"Background: Previous research reports that patients with mental health conditions experience benefits, for example, increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). In mental health care (MHC), PAEHRs remain controversial, as health care professionals are concerned that patients may feel worried or offended by the content of the notes. Moreover, existing research has focused on specific mental health diagnoses, excluding the larger PAEHR userbase with experience in MHC.Objective: The objective of this study is to establish if and how the experiences of patients with and those without MHC differ in using their PAEHRs by (1) comparing patient characteristics and differences in using the national patient portal between the 2 groups and (2) establishing group differences in the prevalence of negative experiences, for example, rates of errors, omissions, and offenses between the 2 groups.Methods: Our analysis was performed on data from an online patient survey distributed through the Swedish national patient portal as part of our international research project, NORDeHEALTH. The respondents were patient users of the national patient portal 1177, aged 15 years or older, and categorized either as those with MHC experience or with any other health care experience (nonmental health care [non-MHC]). Patient characteristics such as gender, age, education, employment, and health status were gathered. Portal use characteristics included frequency of access, encouragement to read the record, and instances of positive and negative experiences. Negative experiences were further explored through rates of error, omission, and offense. The data were summarized through descriptive statistics. Group differences were analyzed through Pearson chi-square.Results: Of the total sample (N=12,334), MHC respondents (n=3131) experienced errors (1586/3131, 50.65%, and non-MHC 3311/9203, 35.98%), omissions (1089/3131, 34.78%, and non-MHC 2427/9203, 26.37%) and offenses (1183/3131, 37.78%, and non-MHC 1616/9203, 17.56%) in the electronic health record at a higher rate than non-MHC respondents (n=9203). Respondents reported that the identified error (MHC 795/3131, 50.13%, and non-MHC 1366/9203, 41.26%) and omission (MHC 622/3131, 57.12%, and non-MHC 1329/9203, 54.76%) were “very important,” but most did nothing to correct them (MHC 792/3131, 41.29%, and non-MHC 1838/9203, 42.17%). Most of the respondents identified as women in both groups.Conclusions: About 1 in 2 MHC patients identified an error in the record, and about 1 in 3 identified an omission, both at a much higher rate than in the non-MHC group. Patients with MHC also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). These findings validate some of the worries expressed by health care professionals about providing patients with MHC with PAEHRs and highlight challenges with the documentation quality in the records.","DOI":"10.2196/47841","PMID":"37921861","NBN":"urn:nbn:se:uu:diva-515506","volume":"25","number":"e47841","container-title":"Journal of Medical Internet Research","ISSN":"1438-8871","keyword":"electronic health records; EHR; mental health; mental health care; national survey; online records access; open notes; ORA; patient-accessible electronic health record; PAEHR; patients; user experiences","publisher":"JMIR Publications","published":[{"raw":"2023-11-03T22:28:00.000+01:00"}],"created":[{"raw":"2023-11-03T22:28:54.870+01:00"}],"updated":[{"raw":"2024-09-26T10:32:46.734+02:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-515506"},{"id":"diva2:1700134","type":"article-journal","status":"Published","issued":{"date-parts":[[2022]]},"title":"Patient empowerment through online access to health records","language":"eng","author":[{"family":"Hägglund","given":"Maria","ORCID":"0000-0002-6839-3651","localId":"mha05791","affiliation":[{"id":"885357","name":"Uppsala universitet, Hälsovetenskap och e-hälsa"},{"id":"1365","name":"Uppsala universitet, Institutionen för medicinska vetenskaper"}]},{"family":"McMillan","given":"Brian"},{"family":"Whittaker","given":"Robyn"},{"family":"Blease","given":"Charlotte"}],"abstract":"Rapid, convenient, and full access to personal electronic health records is a key part of empowering patients to manage their health and collaborate with healthcare, argue Maria Hägglund and colleaguesThe need for digital health solutions to manage health and care became more apparent than ever during the covid-19 pandemic.1 Patient empowerment is essential in such a health crisis. Empowerment requires both access to information and the tools and competence to make informed decisions.During the pandemic, digital provision of information and access to care was implemented and adopted at rates never seen before. Having online access to personal health records has proved an important tool for patient empowerment.234 To cope with social distancing measures, use of telemedicine soared and use of patient portals increased rapidly. In some health systems, platforms for telemedicine visits were offered only through logging into a portal, so patient access to online health records was spurred by video visits.1 Patients were also asked to report covid-19 symptoms through various mobile apps and to carry digital proof of vaccination and covid-19 test results.In parallel with this increased use of digital health solutions, the importance of accessible and structured health data was also emphasized by policy makers internationally. In the United States, a federal rule from the 21st Century Cures Act mandated US healthcare providers to offer patients access to all the health information in their electronic medical records without charge.5 In Europe, the European Health Data Space was proposed in May 2022, with the aim to empower people to control and use their health data in their home country or in other member states and to offer “a consistent, trustworthy, and efficient framework to use health data for research, innovation, policy making, and regulatory activities, while ensuring full compliance …","DOI":"10.1136/bmj-2022-071531","PMID":"36175012","ScopusId":"2-s2.0-85138913264","NBN":"urn:nbn:se:uu:diva-485978","volume":"378","number":"e071531","container-title":"The BMJ","ISSN":"1756-1833","publisher":"BMJ Publishing Group Ltd","published":[{"raw":"2022-09-30T07:39:00.000+02:00"}],"created":[{"raw":"2022-09-30T07:39:53.904+02:00"}],"updated":[{"raw":"2025-11-06T15:38:55.577+01:00"}],"URL":"https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-485978"}],"links":[{"type":"pid","link":"https://uu.diva-portal.org/smash/api/project/swecris/project:6607"}]}]