Citizens' Options When Accessing and Sharing Health Information – An International Survey of IMIA Member Countries

Summary

Introduction: Citizens' access to personal health information and information on prescription medication, options to share personal health data, and how these personal health data are kept secure, are all important themes in health informatics and therefore elaborated upon in this paper.

Methods: The empirical data stems from a survey that examines citizens' temporal access to laboratory test results, options for sharing patient-generated health data (PGHD) with health providers, methods to obtain supplementary information on prescription medication, and security issues pertaining to national standards, education, and experienced breaches.

Results: Results are based on answers from representatives in the International Medical Informatics Association (IMIA) member countries (n=28). Data shows that citizens' online access to test results is possible as soon as they are available in ten countries whereas nine countries have no norm or standard. The most common ways to provide citizens with supplementary information on prescription medication is through package inserts from manufacturers or paper medication information from pharmacies. PGHD is shared primarily in print or by showing the device to the health provider. Regarding e-health security, most countries have national standards for the security, however, less than half of the IMIA representatives answer that health professionals are required training in the national standards. Lastly, 16 of the 28 answers reply that there has been leaks leading to unauthorized access to health data. Future research should focus on how to provide citizens access to lab results according to their needs and examine how to include digital PGHD meaningfully into clinical practice.

Keywords

Consumer Health Informatics - Patient-generated Health Data - Accessibility - Personal Health Information - International Medical Informatics Association

Publikationsverlauf

Artikel online veröffentlicht:
08. April 2025

• References

• 1 WHO. Global strategy on digital health 2020-2025. World Health Organization; 2021.
• 2 McGrath C, Palmarella G, Solomon S, Dupuis R. Precision Prevention and Public Health. Center for Public Health Initiatives, Data Brief. 2017.
• 3 Winston F, Puzino K, Romer D. Precision prevention: time to move beyond universal interventions. Inj Prev. 2016 Apr; 22.
• 4 Canfell O, Littlewood R, Burton-Jones A, Sullivan C. Digital health and precision prevention: shifting from disease-centred care to consumer-centred health. Aust Health Rev. 2022 Jun; https://doi.org/10.1071/AH21063
• 5 Hägglund M, DesRoches C, Petersen C, Scandurra I. Patients' access to Health Records. BMJ. 2019 Oct; https://doi.org/10.1136/bmj.l5725
• 6 Richards T, Coulter A, McMillan B, Hagglund M. Patient access to full General Practice Health Records. BMJ. 2022 Dec; https://doi.org/10.1136/bmj.o3019
• 7 Eriksen J. Purpose, Functionality and Reconceptualisation of Patient-Reported Outcome: a patient participation perspective on pro in clinical practice post its digitalisation. Aalborg Universitetsforlag. ; 2021.
• 8 Essén A, Scandurra I, Gerrits R, Humphrey G, Johansen M, Kierkegaard P. Patient access to electronic health records: Differences across ten countries. Health Policy and Technology. 2017;44–56. https://doi.org/10.1016/j.hlpt.2017.11.003
• 9 Omoloja A, Vundavalli S. Patient generated health data: Benefits and challenges. Current Problems in Pediatric and Adolescent Health Care. 2021 Nov; https://doi.org/10.1016/j.cppeds.2021
• 10 Hussein R, Crutzen R, Gutenberg J, Kulnik S, Sareban M, Niebauer J. Patient-generated health data (PGHD) interoperability: An integrative perspective. Studies in Health Technology and Informatics. 2021 May; https://doi.org/10.3233/SHTI210154
• 11 Adler-Milstein J, Nong P. Early experiences with patient generated health data: health system and patient perspectives. JAMIA. 2019 Oct; https://doi.org/10.1093/jamia/ocz045
• 12 Lavallee D, Lee J, Austin E, Bloch R, Lawrence S, McCall D. MHealth and patient generated health data: Stakeholder perspectives on opportunities and barriers for Transforming Healthcare. mHealth. 2020 Jan; https://doi.org/10.21037/mhealth.2019.09.17
• 13 Eriksen J, Bygholm A, Bertelsen P. The association between patient-reported outcomes (pros) and patient participation in chronic care: A scoping review. Patient Education and Counseling. 2022 Jul; https://doi.org/10.1016/j.pec.2022.01.008
• 14 Gensheimer S, Wu A, Snyder C. Oh, the places we'll go: Patient-reported outcomes and Electronic Health Records. The Patient - Patient-Centered Outcomes Research. 2018 Dec; https://doi.org/10.1007/s40271-018-0321-9
• 15 Eriksen J, Monkman H, Adler-Milstein J, Eriksen K, Nøhr C. Citizens' Access to Online Health Information – An International Survey of IMIA Member Countries. Medinfo Proceeding. 2024 Jan.
• 16 WHO. who.int. [Online].; 2023 [cited 2024 01. Available from: https://www.who.int/countries/
• 17 IMIA. The IMIA Code of Ethics for Health Information Professionals. [Online].; 2016. Available from: https://imia-medinfo.org/wp/imia-code-of-ethics/
• 18 Monkman H, Nøhr C, Kushniruk A. A Comparison of Danish and Canadian Consumer Medication Information. Studies in Health Technology and Informatics. 2017;: 147-152.
• 19 Pearsall BM,AR,HD. Essential Medication Information for Patients: Ensuring Access. Therapeutic Innovation & Regulatory Science. 2014.
• 20 Hammar T, Nilsson A, Hovstadius B. Patients' views on electronic patient information leaflets. Pharm Pract (Granada). 2016 Jun; https://doi.org/10.18549/PharmPract.2016.02.702
• 21 Monkman H, Kushniruk A, Borycki E, Sheets D, Barnett J, Nøhr C. The Medium Is the Message: How Do Canadian University Students Want Digital Medication Information? Life. 2020 Dec; https://doi.org/10.3390/life10120339
• 22 Monkman H, Kushniruk A, Borycki E, Sheets D, Barnett J. Differences in Memory, Perceptions, and Preferences of Multimedia Consumer Medication Information: Experimental Performance and Self-Report Study. JMIR Human Factors. 2020 Dec; https://doi.org/10.2196/15913
• 23 European Commission. Communication from the Commission - A European Health Data Space: harnessing the power of health data for people, patients and innovation. Strasbourg:; 2022.
• 24 Eriksen J, Hjermitslev C, Tuulikki V, Harðardóttir G, Koch S, Faxvaag A, et al. A Nordic survey to monitor citizens use and experience with eHealth. Copenhagen:; 2023.
• 25 Austin E, Lee J, Amtmann D, Bloch R, Lawrence S, McCall D. Use of patient-generated health data across healthcare settings: Implications for health systems. JAMIA Open. 2019 Nov; https://doi.org/10.1093/jamiaopen/ooz065
• 26 Parsons K, Calic D, Pattinson M, Butavicius M, McCormac A, Zwaans T. The Human Aspects of Information Security Questionnaire (HAIS-Q): Two further validation studies. Computers & Security. 2017; 66:40-51. https://doi.org/10.1016/j.cose.2017.01.004
• 27 Schmidt T, Nøhr C, Koppel R. A Simple Assessment of Information Security Awareness in Hospital Staff Across Five Danish Regions. Public Health and Informatics, Studies in Health Technology and Informatics. 2021 May. https://doi.org/10.3233/SHTI210248
• 28 Kushniruk A, Nøhr C. Participatory design, user involvement and health IT evaluation. In Rigby M AE. Evidence-Based Health Informatics: Promoting Safety and Efficiency through Scientific Methods and Ethical Policy. IOS Press; 2016. p. 139-151.