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The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia
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.
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 ; School of Psychology, Faculty of Health, University of Plymouth, United Kingdom.
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 .
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.
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2023 (English)In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, article id e47573Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Although many surveys have been conducted on patients accessing their own health records in recent years, there is a limited amount of nationwide cross-country data available on patients' views and preferences. To address this gap, an international survey of patient users was conducted in the Nordic eHealth project, NORDeHEALTH. OBJECTIVE: We aimed to investigate the sociodemographic characteristics and experiences of patients who accessed their electronic health records (EHRs) through national patient portals in Norway, Sweden, Finland, and Estonia. METHODS: A cross-sectional web-based survey was distributed using the national online health portals. The target participants were patients who accessed the national patient portals at the start of 2022 and who were aged ≥15 years. The survey included a mixture of close-ended and free-text questions about participant sociodemographics, usability experience, experiences with health care and the EHR, reasons for reading health records online, experience with errors, omissions and offense, opinions about security and privacy, and the usefulness of portal functions. In this paper, we summarized the data on participant demographics, past experience with health care, and the patient portal through descriptive statistics. RESULTS: In total, 29,334 users completed the survey, of which 9503 (32.40%) were from Norway, 13,008 (44.35%) from Sweden, 4713 (16.07%) from Finland, and 2104 (7.17%) from Estonia. National samples were comparable according to reported gender, with about two-thirds identifying as women (19,904/29,302, 67.93%). Age distributions were similar across the countries, but Finland had older users while Estonia had younger users. The highest attained education and presence of health care education varied among the national samples. In all 4 countries, patients most commonly rated their health as "fair" (11,279/29,302, 38.48%). In Estonia, participants were more often inclined to rate their health positively, whereas Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, most patients received some care in the last 2 years (25,318/29,254, 86.55%). Mental health care was more common (6214/29,254, 21.24%) than oncological care (3664/29,254, 12.52%). Overall, most patients had accessed their health record "2 to 9 times" (11,546/29,306, 39.4%), with the most frequent users residing in Sweden, where about one-third of patients accessed it "more than 20 times" (4571/13,008, 35.14%). CONCLUSIONS: This is the first large-scale international survey to compare patient users' sociodemographics and experiences with accessing their EHRs. Although the countries are in close geographic proximity and demonstrate similar advancements in giving their residents online records access, patient users in this survey differed. We will continue to investigate patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined data sets from the NORDeHEALTH 2022 Patient Survey. 

Place, publisher, year, edition, pages
JMIR Publications, 2023. Vol. 25, article id e47573
Keywords [en]
electronic health record, health data, national survey, online medical record, online records access, patient access, patient portal, patient-accessible electronic health record, Cross-Sectional Studies, Electronic Health Records, Estonia, Female, Finland, Humans, Norway, Patient Portals, Sweden, cross-sectional study, epidemiology, human, medical record
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Public Health, Global Health, Social Medicine and Epidemiology Information Systems
Research subject
Information Systems
Identifiers
URN: urn:nbn:se:his:diva-23380DOI: 10.2196/47573ISI: 001106906500004PubMedID: 37955963Scopus ID: 2-s2.0-85176787931OAI: oai:DiVA.org:his-23380DiVA, id: diva2:1814134
Projects
Nordic eHealth project, NORDeHEALTH
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, #2020-01229Academy of Finland, #352501Academy of Finland, #352503
Note

CC BY 4.0 DEED

©Maria Hägglund, Anna Kharko, Josefin Hagström, Annika Bärkås, Charlotte Blease, Åsa Cajander, Catherine DesRoches, Asbjørn Johansen Fagerlund, Barbara Haage, Isto Huvila, Iiris Hörhammer, Bridget Kane, Gunnar O Klein, Eli Kristiansen, Kerli Luks, Jonas Moll, Irene Muli, Eline Hovstad Raphaug, Hanife Rexhepi, Sara Riggare, Peeter Ross, Isabella Scandurra, Saija Simola, Hedvig Soone, Bo Wang, Mae

Corresponding Author: Maria Hägglund, PhD, Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Mtc-huset, Dag Hammarskjölds Väg 14b, 1 Tr, Uppsala, 752 37 Sweden. Phone: 46 729999381. Email: maria.hagglund@kbh.uu.se 

This work was supported by NordForsk through funding to Nordic eHealth for Patients: Benchmarking and Developing for theFuture, NORDeHEALTH (project #100477), the Swedish Research Council for Health, Working Life and Welfare (Forskningsrådetför hälsa, arbetsliv och välfärd [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 funders played no role in the study design, data interpretation,writing of the results, or decision to submit the manuscript for publication.

Available from: 2023-11-23 Created: 2023-11-23 Last updated: 2024-04-15Bibliographically approved

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