Published on in Vol 20, No 11 (2018): November

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/9492, first published .
Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden

Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden

Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden

Journals

  1. Nurgalieva L, Cajander Å, Moll J, Åhlfeldt R, Huvila I, Marchese M. ‘I do not share it with others. No, it’s for me, it’s my care’: On sharing of patient accessible electronic health records. Health Informatics Journal 2020;26(4):2554 View
  2. Moll J, Cajander Å. Oncology health-care professionals’ perceived effects of patient accessible electronic health records 6 years after launch: A survey study at a major university hospital in Sweden. Health Informatics Journal 2020;26(2):1392 View
  3. Coorey G, Peiris D, Usherwood T, Neubeck L, Mulley J, Redfern J, MacLure K. Persuasive design features within a consumer-focused eHealth intervention integrated with the electronic health record: A mixed methods study of effectiveness and acceptability. PLOS ONE 2019;14(6):e0218447 View
  4. Foster B, Krasowski M. The Use of an Electronic Health Record Patient Portal to Access Diagnostic Test Results by Emergency Patients at an Academic Medical Center: Retrospective Study. Journal of Medical Internet Research 2019;21(6):e13791 View
  5. Huvila I, Enwald H, Eriksson‐Backa K, Liu Y, Hirvonen N. Information behaviour and practises research informing technology and service design. Proceedings of the Association for Information Science and Technology 2019;56(1):541 View
  6. Wilkie P. Patient views on understanding laboratory results. Clinical Chemistry and Laboratory Medicine (CCLM) 2019;57(3):371 View
  7. Power K, McCrea Z, White M, Breen A, Dunleavy B, O’Donoghue S, Jacquemard T, Lambert V, El‐Naggar H, Delanty N, Doherty C, Fitzsimons M. The development of an epilepsy electronic patient portal: Facilitating both patient empowerment and remote clinician‐patient interaction in a post‐COVID‐19 world. Epilepsia 2020;61(9):1894 View
  8. Rexhepi H, Moll J, Huvila I. Online electronic healthcare records: Comparing the views of cancer patients and others. Health Informatics Journal 2020;26(4):2915 View
  9. Stefansdottir V, Thorolfsdottir E, Hognason H, Patch C, van El C, Hentze S, Cordier C, Mendes Á, Jonsson J. Web-based return of BRCA2 research results: one-year genetic counselling experience in Iceland. European Journal of Human Genetics 2020;28(12):1656 View
  10. Zanaboni P, Kummervold P, Sørensen T, Johansen M. Patient Use and Experience With Online Access to Electronic Health Records in Norway: Results From an Online Survey. Journal of Medical Internet Research 2020;22(2):e16144 View
  11. Woods L, Duff J, Roehrer E, Walker K, Cummings E. Patients’ Experiences of Using a Consumer mHealth App for Self-Management of Heart Failure: Mixed-Methods Study. JMIR Human Factors 2019;6(2):e13009 View
  12. Blease C, Fernandez L, Bell S, Delbanco T, DesRoches C. Empowering patients and reducing inequities: is there potential in sharing clinical notes?. BMJ Quality & Safety 2020;29(10):1.8 View
  13. Hägglund M, DesRoches C, Petersen C, Scandurra I. Patients’ access to health records. BMJ 2019:l5725 View
  14. Kruithof N, Spreeuwenberg M, Kleijkers S, Bruls B, Gurp E. Zorgen om online inzage in het eigen patiëntendossier. Huisarts en wetenschap 2020;63(12):62 View
  15. Blease C, Torous J, Hägglund M. Does Patient Access to Clinical Notes Change Documentation?. Frontiers in Public Health 2020;8 View
  16. Wright J, Leveille S, Chimowitz H, Fossa A, Stametz R, Clarke D, Walker J. Validation of a brief scale to assess ambulatory patients’ perceptions of reading visit notes: a scale development study. BMJ Open 2020;10(10):e034517 View
  17. Belfrage S, Lynöe N, Helgesson G. Willingness to Share yet Maintain Influence: A Cross-Sectional Study on Attitudes in Sweden to the Use of Electronic Health Data. Public Health Ethics 2021;14(1):23 View
  18. Davis S. Ready for Prime Time? Using Normalization Process Theory to Evaluate Implementation Success of Personal Health Records Designed for Decision Making. Frontiers in Digital Health 2020;2 View
  19. Avdagovska M, Menon D, Stafinski T. Capturing the Impact of Patient Portals Based on the Quadruple Aim and Benefits Evaluation Frameworks: Scoping Review. Journal of Medical Internet Research 2020;22(12):e24568 View
  20. Moerenhout T, Devisch I, Cooreman L, Bernaerdt J, De Sutter A, Provoost V. Patients’ moral attitudes toward electronic health records: Survey study with vignettes and statements. Health Informatics Journal 2021;27(1) View
  21. Benjamins J, Haveman-Nies A, Gunnink M, Goudkuil A, de Vet E. How the Use of a Patient-Accessible Health Record Contributes to Patient-Centered Care: Scoping Review. Journal of Medical Internet Research 2021;23(1):e17655 View
  22. Nøst T, Faxvaag A, Steinsbekk A. Participants’ views and experiences from setting up a shared patient portal for primary and specialist health services- a qualitative study. BMC Health Services Research 2021;21(1) View
  23. Blease C, O'Neill S, Torous J, DesRoches C, Hagglund M. Patient Access to Mental Health Notes. Journal of Nervous & Mental Disease 2021;209(4):265 View
  24. Huvila I, Cajander Å, Moll J, Enwald H, Eriksson-Backa K, Rexhepi H. Technological and informational frames: explaining age-related variation in the use of patient accessible electronic health records as technology and information. Information Technology & People 2022;35(8):1 View
  25. Eriksson-Backa K, Hirvonen N, Enwald H, Huvila I. Enablers for and barriers to using My Kanta – A focus group study of older adults’ perceptions of the National Electronic Health Record in Finland. Informatics for Health and Social Care 2021;46(4):399 View
  26. Blease C, Torous J, Kharko A, DesRoches C, Harcourt K, O'Neill S, Salmi L, Wachenheim D, Hägglund M. Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts. JMIR Mental Health 2021;8(4):e27397 View
  27. Turvey C, Fuhrmeister L, Klein D, Moeckli J, Howren M, Chasco E. Patient and Provider Experience of Electronic Patient Portals and Secure Messaging in Mental Health Treatment. Telemedicine and e-Health 2022;28(2):189 View
  28. Blease C, Salmi L, Rexhepi H, Hägglund M, DesRoches C. Patients, clinicians and open notes: information blocking as a case of epistemic injustice. Journal of Medical Ethics 2022;48(10):785 View
  29. Blease C, Salmi L, Hägglund M, Wachenheim D, DesRoches C. COVID-19 and Open Notes: A New Method to Enhance Patient Safety and Trust. JMIR Mental Health 2021;8(6):e29314 View
  30. Lee J, Park Y, Park Y, Lee J. Review of National-Level Personal Health Records in Advanced Countries. Healthcare Informatics Research 2021;27(2):102 View
  31. Valeur H, Lie A, Moen K. Patient Rationales Against the Use of Patient-Accessible Electronic Health Records: Qualitative Study. Journal of Medical Internet Research 2021;23(5):e24090 View
  32. Cijvat C, Cornet R, Hägglund M. Factors Influencing Development and Implementation of Patients' Access to Electronic Health Records—A Comparative Study of Sweden and the Netherlands. Frontiers in Public Health 2021;9 View
  33. Hägglund M, Scandurra I. User Evaluation of the Swedish Patient Accessible Electronic Health Record: System Usability Scale. JMIR Human Factors 2021;8(3):e24927 View
  34. Janssen S, Venema-Taat N, Medlock S. Anticipated Benefits and Concerns of Sharing Hospital Outpatient Visit Notes With Patients (Open Notes) in Dutch Hospitals: Mixed Methods Study. Journal of Medical Internet Research 2021;23(8):e27764 View
  35. Sääskilahti M, Ahonen R, Timonen J. Pharmacy Customers’ Experiences of Use, Usability, and Satisfaction of a Nationwide Patient Portal: Survey Study. Journal of Medical Internet Research 2021;23(7):e25368 View
  36. Fitzsimons M, Power K, McCrea Z, Kiersey R, White M, Dunleavy B, O'Donoghue S, Lambert V, Delanty N, Doherty C. Democratizing epilepsy care: Utility and usability of an electronic patient portal. Epilepsy & Behavior 2021;122:108197 View
  37. Rexhepi H, Huvila I, Åhlfeldt R, Cajander Å. Cancer patients’ information seeking behavior related to online electronic healthcare records. Health Informatics Journal 2021;27(3) View
  38. Lear R, Freise L, Kybert M, Darzi A, Neves A, Mayer E. Perceptions of Quality of Care Among Users of a Web-Based Patient Portal: Cross-sectional Survey Analysis. Journal of Medical Internet Research 2022;24(11):e39973 View
  39. Kujala S, Hörhammer I, Väyrynen A, Holmroos M, Nättiaho-Rönnholm M, Hägglund M, Johansen M. Patients' Experiences of Web-Based Access to Electronic Health Records in Finland: Cross-sectional Survey. Journal of Medical Internet Research 2022;24(6):e37438 View
  40. Aydin G, Kumru S. Paving the way for increased e-health record use: elaborating intentions of Gen-Z. Health Systems 2023;12(3):281 View
  41. Rahman Jabin M, Hammar T. Issues with the Swedish e-prescribing system – An analysis of health information technology-related incident reports using an existing classification system. DIGITAL HEALTH 2022;8:205520762211311 View
  42. Carini E, Villani L, Pezzullo A, Gentili A, Barbara A, Ricciardi W, Boccia S. The Impact of Digital Patient Portals on Health Outcomes, System Efficiency, and Patient Attitudes: Updated Systematic Literature Review. Journal of Medical Internet Research 2021;23(9):e26189 View
  43. Kainiemi E, Vehko T, Kyytsönen M, Hörhammer I, Kujala S, Jormanainen V, Heponiemi T. The Factors Associated With Nonuse of and Dissatisfaction With the National Patient Portal in Finland in the Era of COVID-19: Population-Based Cross-sectional Survey. JMIR Medical Informatics 2022;10(4):e37500 View
  44. Sundell E, Wångdahl J, Grauman Å. Health literacy and digital health information-seeking behavior – a cross-sectional study among highly educated Swedes. BMC Public Health 2022;22(1) View
  45. Schwarz J, Bärkås A, Blease C, Collins L, Hägglund M, Markham S, Hochwarter S. Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review. JMIR Mental Health 2021;8(12):e34170 View
  46. Blease C. Sharing online clinical notes with patients: implications for nocebo effects and health equity. Journal of Medical Ethics 2023;49(1):14 View
  47. Lam B, Dupee D, Gerard M, Bell S. A Patient-Centered Approach to Writing Ambulatory Visit Notes in the Cures Act Era. Applied Clinical Informatics 2023;14(01):199 View
  48. Hägglund M, Scandurra I. Usability of the Swedish Accessible Electronic Health Record: Qualitative Survey Study. JMIR Human Factors 2022;9(2):e37192 View
  49. Bernstein J. Not the Last Word: Seeing Ourselves as Doctors See Us. Clinical Orthopaedics & Related Research 2022;480(9):1653 View
  50. Hagström J, Blease C, Haage B, Scandurra I, Hansson S, Hägglund M. Use of and Experiences With Online Access to Electronic Health Records for Parents, Children, and Adolescents: Protocol for a Scoping Review. JMIR Research Protocols 2022;11(6):e36158 View
  51. Hägglund M, Cajander Å, Rexhepi H, Kane B. Editorial: Personalized Digital Health and Patient-Centric Services. Frontiers in Computer Science 2022;4 View
  52. Hägglund M, McMillan B, Whittaker R, Blease C. Patient empowerment through online access to health records. BMJ 2022:e071531 View
  53. Cajander Å, Huvila I, Salminen-Karlsson M, Lind T, Scandurra I. Effects of patient accessible electronic health records on nurses’ work environment: a survey study on expectations in Sweden. BMJ Open 2022;12(11):e059188 View
  54. Rexhepi H, Moll J, Huvila I, Åhlfeldt R. Do you want to receive bad news through your patient accessible electronic health record? A national survey on receiving bad news in an era of digital health. Health Informatics Journal 2021;27(3) View
  55. Blease C, Torous J, Dong Z, Davidge G, DesRoches C, Kharko A, Turner A, Jones R, Hägglund M, McMillan B. Patient Online Record Access in English Primary Care: Qualitative Survey Study of General Practitioners’ Views. Journal of Medical Internet Research 2023;25:e43496 View
  56. Sääskilahti M, Ojanen A, Ahonen R, Timonen J. Benefits, Problems, and Potential Improvements in a Nationwide Patient Portal: Cross-sectional Survey of Pharmacy Customers’ Experiences. Journal of Medical Internet Research 2021;23(11):e31483 View
  57. Huvila I, Enwald H, Eriksson‐Backa K, Liu Y, Hirvonen N. Information behavior and practices research informing information systems design. Journal of the Association for Information Science and Technology 2022;73(7):1043 View
  58. Choi W, Chun J, Lee S, Chang S, Kim D, Choi I. Development of a MyData Platform Based on the Personal Health Record Data Sharing System in Korea. Applied Sciences 2021;11(17):8208 View
  59. Heckemann B, Graf T, Ung E, Jakobsson S, Ragnarsson O, Olsson D, Blomdahl C. The importance of personal documentation for patients living with long‐term illness symptoms after pituitary surgery: A Constructivist Grounded Theory study. Health Expectations 2023;26(1):226 View
  60. Hagström J, Blease C, Haage B, Scandurra I, Hansson S, Hägglund M. Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review. Journal of Medical Internet Research 2022;24(11):e40328 View
  61. Griesser A, Bidmon S. A Process Related View on the Usage of Electronic Health Records from the Patients’ Perspective: A Systematic Review. Journal of Medical Systems 2022;47(1) View
  62. Rumball-Smith J, Ross K, Bates D. Late adopters of the electronic health record should move now. BMJ Quality & Safety 2020;29(3):238 View
  63. Choi W, Chang S, Yang Y, Jung S, Lee S, Chun J, Kim D, Lee W, Choi I. Study of the factors influencing the use of MyData platform based on personal health record data sharing system. BMC Medical Informatics and Decision Making 2022;22(1) View
  64. Bärkås A, Scandurra I, Rexhepi H, Blease C, Cajander Å, Hägglund M. Patients’ Access to Their Psychiatric Notes: Current Policies and Practices in Sweden. International Journal of Environmental Research and Public Health 2021;18(17):9140 View
  65. Keuper J, Batenburg R, van Tuyl L, Verheij R. General Practices’ Experiences With Patients’ Web-Based Access to Medical Records: Survey Study. Journal of Medical Internet Research 2023;25:e41832 View
  66. Liu J, Gong X, Weal M, Dai W, Hou S, Ma J. Attitudes and associated factors of patients’ adoption of patient accessible electronic health records in China — A mixed methods study. DIGITAL HEALTH 2023;9 View
  67. Birinci Ş. A Digital Opportunity for Patients to Manage Their Health: Turkey National Personal Health Record System (The e-Nabız). Balkan Medical Journal 2023;40(3):215 View
  68. El Yaman N, Zeitoun J, Diab R, Mdaihly M, Diab R, Kobeissi L, Abou Ljoud S, Antoun J, Bardus M. Utilization of patient portals: a cross-sectional study investigating associations with mobile app quality. BMC Medical Informatics and Decision Making 2023;23(1) View
  69. Bärkås A, Kharko A, Blease C, Cajander Å, Johansen Fagerlund A, Huvila I, Johansen M, Kane B, Kujala S, Moll J, Rexhepi H, Scandurra I, Wang B, Hägglund M. Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden. Journal of Medical Internet Research 2023;25:e47841 View
  70. Petrovskaya O, Karpman A, Schilling J, Singh S, Wegren L, Caine V, Kusi-Appiah E, Geen W. Patient and Health Care Provider Perspectives on Patient Access to Test Results via Web Portals: Scoping Review. Journal of Medical Internet Research 2023;25:e43765 View
  71. Blease C, Torous J, McMillan B, Hägglund M, Mandl K. Generative Language Models and Open Notes: Exploring the Promise and Limitations. JMIR Medical Education 2024;10:e51183 View
  72. Kuppanda P, Jenkins J. Evaluation of Experiences and Attitudes of Patients Towards Patient Portal–Enabled Access to Their Health Information or Medical Records: A Qualitative Grounded Theory Study. Qualitative Health Research 2023;33(12):1080 View
  73. Hägglund M, Kharko A, Hagström J, Bärkås A, Blease C, Cajander Å, DesRoches C, Fagerlund A, Haage B, Huvila I, Hörhammer I, Kane B, Klein G, Kristiansen E, Luks K, Moll J, Muli I, Raphaug E, Rexhepi H, Riggare S, Ross P, Scandurra I, Simola S, Soone H, Wang B, Ghorbanian Zolbin M, Åhlfeldt R, Kujala S, Johansen M. The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia. Journal of Medical Internet Research 2023;25:e47573 View
  74. Simola S, Hörhammer I, Xu Y, Bärkås A, Fagerlund A, Hagström J, Holmroos M, Hägglund M, Johansen M, Kane B, Kharko A, Scandurra I, Kujala S. Patients’ Experiences of a National Patient Portal and Its Usability: Cross-Sectional Survey Study. Journal of Medical Internet Research 2023;25:e45974 View
  75. Moll J, Myreteg G, Rexhepi H. Mental Health Patients’ Experiences of Having Access to their Records Online: National Patient Survey (Preprint). JMIR Mental Health 2023 View
  76. Bajrić S. Building a Sustainable Ecosystem for eHealth in Slovenia: Opportunities, Challenges, and Strategies. DIGITAL HEALTH 2023;9 View
  77. Wang B, Kristiansen E, Fagerlund A, Zanaboni P, Hägglund M, Bärkås A, Kujala S, Cajander Å, Blease C, Kharko A, Huvila I, Kane B, Johansen M. Users’ Experiences With Online Access to Electronic Health Records in Mental and Somatic Health Care: Cross-Sectional Study. Journal of Medical Internet Research 2023;25:e47840 View
  78. Blease C. Open AI meets open notes: surveillance capitalism, patient privacy and online record access. Journal of Medical Ethics 2024;50(2):84 View
  79. Sullivan R, Williams J, Robinson J, Thompson I, McNicoll I, Nichols T. Pathways to interoperable electronic patient records for health and social care: Part 1: for those involved directly in care. Future Healthcare Journal 2023;10(3):232 View
  80. Ramamoorthi K, Stamenova V, Liu R, Bhattacharyya O. The Implementation of Federated Digital Identifiers (FDIs) in Healthcare: A Rapid Review (Preprint). Journal of Medical Internet Research 2023 View
  81. Blease C, Kharko A, Dong Z, Jones R, Davidge G, Hagglund M, Turner A, DesRoches C, McMillan B. Experiences and opinions of general practitioners with patient online record access: an online survey in England. BMJ Open 2024;14(1):e078158 View
  82. Rawlins M, Yu X. Identifying the Software Quality Attributes that Affect Patient Portal Adoption in Trinidad and Tobago. SN Computer Science 2024;5(2) View
  83. Opele J, Onayinka T, Fagbami I, Ugwu N. Awareness and Use of Infographic Tools among Librarians in Nigeria. New Review of Academic Librarianship 2024;30(1):52 View
  84. Hagström J, Blease C, Scandurra I, Moll J, Cajander Å, Rexhepi H, Hägglund M. Adolescents’ reasons for accessing their health records online, perceived usefulness and experienced provider encouragement: a national survey in Sweden. BMJ Paediatrics Open 2024;8(1):e002258 View
  85. Xu Y, Pei Z, He X, Guo L, Zeng L, Huang X, Zhang J. The individuals’ awareness and adoption of electronic health records in China: a questionnaire survey of 1,337 individuals. BMC Public Health 2024;24(1) View
  86. Kharko A, Buergler S, Bärkås A, Hägglund M, Gaab J, Fagerlund A, Locher C, Blease C. Open notes in psychotherapy: An exploratory mixed methods survey of psychotherapy students in Switzerland. DIGITAL HEALTH 2024;10 View
  87. Moll J, Scandurra I, Bärkås A, Blease C, Hägglund M, Hörhammer I, Kane B, Kristiansen E, Ross P, Åhlfeldt R, Klein G. Sociotechnical Cross-Country Analysis of Contextual Factors That Impact Patients’ Access to Electronic Health Records in 4 European Countries: Framework Evaluation Study. Journal of Medical Internet Research 2024;26:e55752 View
  88. Maaß L, Angoumis K, Freye M, Pan C. Mapping Digital Public Health Interventions Among Existing Digital Technologies and Internet-Based Interventions to Maintain and Improve Population Health in Practice: Scoping Review. Journal of Medical Internet Research 2024;26:e53927 View
  89. Høpfner Jensen L, Kold S, Dinesen B, Husum H, Skals R, Eiskjær S, Elsøe R, Rahbek O. Team-based digital communication reduced patient-initiated phone calls to the hospital and improved patient satisfaction after orthopedic surgery: a randomized controlled trial in 70 patients. Acta Orthopaedica 2024;95:225 View
  90. Hägglund M, Kharko A, Bärkås A, Blease C, Cajander Å, DesRoches C, Fagerlund A, Hagström J, Huvila I, Hörhammer I, Kane B, Klein G, Kristiansen E, Moll J, Muli I, Rexhepi H, Riggare S, Ross P, Scandurra I, Simola S, Soone H, Wang B, Ghorbanian Zolbin M, Åhlfeldt R, Kujala S, Johansen M. A Nordic Perspective on Patient Online Record Access and the European Health Data Space. Journal of Medical Internet Research 2024;26:e49084 View
  91. Fagerlund A, Bärkås A, Kharko A, Blease C, Hagström J, Huvila I, Hörhammer I, Kane B, Kristiansen E, Kujala S, Moll J, Rexhepi H, Scandurra I, Simola S, Soone H, Wang B, Åhlfeldt R, Hägglund M, Johansen M. Experiences from patients in mental healthcare accessing their electronic health records: results from a cross-national survey in Estonia, Finland, Norway, and Sweden. BMC Psychiatry 2024;24(1) View
  92. O’Callaghan G, Fahy M, O’Meara S, Lindblom S, von Koch L, Langhorne P, Galvin R, Horgan F. Experiences and preferences of people with stroke and caregivers, around supports provided at the transition from hospital to home: a qualitative descriptive study. BMC Neurology 2024;24(1) View
  93. Wise A. For Whom the Note Scrolls. Neurology Education 2024;3(3) View
  94. Muli I, Cajander Å, Hvitfeldt H, Lagerros Y, Söderberg D, Sjöblom L, Dahlgren A, Bertilson B, Farrokhnia N, Amer-Wåhlin I, Taloyan M, Hägglund M. To read or not to read – A cross-sectional study of Swedish primary care patients’ adoption of patient accessible electronic health records. DIGITAL HEALTH 2024;10 View

Books/Policy Documents

  1. Enwald H, Eriksson-Backa K, Hirvonen N, Huvila I. Information Experience and Information Literacy. View