Willingness to share anonymised routinely collected clinical health data in Switzerland: a cross-sectional survey
AIMS OF THE SURVEY: Routinely collected health data (or real-world data) from hospitals is becoming increasingly important to advance medical progress. Anonymisation of these data facilitates data sharing processes. This allows stakeholders of the healthcare system to compliantly access this anonymised data to address epidemiological questions, advance precision medicine, support drug development or address other medical needs. As the willingness of the general Swiss population to share anonymised health data has been uncertain, a survey was conducted to better understand their perception of sharing such data for research purposes. The present survey focused on the re-use (secondary use) of hospital-derived health data in anonymised form.
METHODS: A cross-sectional survey was conducted in a representative random sample (n = 1006) of the general Swiss population. The general population was contacted by phone between 14 September and 3 October 2020. The survey was also conducted in an additional population with chronic disease (n = 225) via an online panel. An independent research organisation (gfs-zürich) was commissioned to conduct the survey. The survey participation was anonymous and voluntary. The demographic composition of the interviewed participants from the general population was specifically constructed to be representative of the 18+-year-old French- and German-speaking population of Switzerland, according to the quota features gender, age and language region. Representativeness of the chronic disease population is unclear.
RESULTS: 71% of the general population and 81% of the chronic disease group reported that they would share their anonymised health data for medical research. The drivers were mainly of an altruistic nature. Hurdles concern mainly data protection issues, potential misuse or disadvantages, e.g., by health insurers. About 56% of the general population would like to be better informed about the use of their personal health data, and 69% spontaneously reported health authorities as the stakeholder responsible for providing such information.
CONCLUSIONS: The survey showed that the Swiss population is willing to share anonymised health data given that some key concerns are addressed. Our findings underline that a better understanding of the standards and processes around health data privacy and transparent data usage is important to build trust in the public eye. An open dialogue is required to develop a common consent on data governance for Switzerland, which would allow health data sharing with third parties. This open dialogue should involve all stakeholders of the healthcare system, so as to strive towards both a more personalised and a more sustainable Swiss healthcare system.
- Cave A, Kurz X, Arlett P. Real-World Data for Regulatory Decision Making: Challenges and Possible Solutions for Europe. Clin Pharmacol Ther. 2019 Jul;106(1):36–9. https://doi.org/10.1002/cpt.1426
- US Food & Drug Administration. Framework for FDA’s Real-World Evidence Program 2018 [01 October 2021]. Available from: https://www.fda.gov/media/120060/download
- Vayena E, Dzenowagis J, Brownstein JS, Sheikh A. Policy implications of big data in the health sector. Bull World Health Organ. 2018 Jan;96(1):66–8. https://doi.org/10.2471/BLT.17.197426
- Geneviève LD, Martani A, Mallet MC, Wangmo T, Elger BS. Factors influencing harmonized health data collection, sharing and linkage in Denmark and Switzerland: A systematic review. PLoS One. 2019 Dec;14(12):e0226015. https://doi.org/10.1371/journal.pone.0226015
- SWI swissinfo.ch. Digitising clinical data: an uphill road for Switzerland. Published February 12, 2021. Available from: https://www.swissinfo.ch/eng/sanit%C3%A0_digitizing-clinical-data--an-uphill-road-for-switzerland/46363068
- National Institute for Cancer Epidemiology and Registration. National Agency for Cancer Registration 2020 [01 October 2021]. Available from: https://www.nacr.ch/
- Universitäre Medizin Schweiz. Generalkonsent für die Forschung 2021 [01 October 2021]. Available from: https://www.unimedsuisse.ch/de/projekte/generalkonsent
- Swiss Personalised Health Network. Infrastructure building to enable nationwide use and exchange of health data for research. An initiative of the Swiss Government [11 February 2022]. Available from https://sphn.ch/
- Meier-Abt PJ, Lawrence AK, Selter L, et al. The Swiss approach to precision medicine. Published 2. January 2018. Swiss Medical Weekly. Available from: https://smw.ch/op-eds?tx_swablog_postdetail%5Bpost%5D=65
- Swiss Federal Council. Konzept für die Auswertung und Veröffentlichung von Krebsdaten - 3. Jährliches Krebsmonitoring 2020 [01 October 2021]. Available from: https://www.bag.admin.ch/bag/de/home/gesetze-und-bewilligungen/gesetzgebung/gesetzgebung-mensch-gesundheit/gesetzgebung-krebsregistrierung/datenbearbeitung_und_datennutzung.html
- Martani A, Egli P, Widmer M, Elger B. Data protection and biomedical research in Switzerland: setting the record straight. Swiss Med Wkly. 2020 Sep;150:w20332. https://doi.org/10.4414/smw.2020.20332
- Swissethics. Ethical health data sharing in public-private partnerships - Guidelines. Update published 16. December 2021. Available from: https://swissethics.ch/themen/ethischer-austausch-von-gesundheitsdaten-in-oeffentlich-privaten-partnerschaften
- Vokinger KN, Stekhoven DJ, Krauthammer M. Lost in Anonymization - A Data Anonymization Reference Classification Merging Legal and Technical Considerations. J Law Med Ethics. 2020 Mar;48(1):228–31. https://doi.org/10.1177/1073110520917025
- Mourby M. Anonymity in EU Health Law: Not an Alternative to Information Governance. Med Law Rev. 2020 Aug;28(3):478–501. https://doi.org/10.1093/medlaw/fwaa010
- European Commission - Consumers. Health, Agriculture and Food Executive Agency. Assessment of the EU Member States’ rules on health data in the light of GDPR. [11. February 2022] Available from: https://ec.europa.eu/health/system/files/2021-02/ms_rules_health-data_en_0.pdf
- Interpharma. Serie Gesundheitsdatenökosystem Teil 1: Mit Massnahmen in sechs Bereichen zum Gesundheitsdatenökosystem 2021 [01 August 2021]. Available from: https://www.interpharma.ch/blog/serie-gesundheitsdatenoekosystem-teil-1-mit-massnahmen-in-sechs-bereichen-zum-gesundheitsdatenoekosystem/
- Brall C, Berlin C, Zwahlen M, Ormond KE, Egger M, Vayena E. Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey. PLoS One. 2021 Apr;16(4):e0249141. https://doi.org/10.1371/journal.pone.0249141
- Bortz J., Schuster C. Statistik für Human- und Sozialwissenschaftler. Springer Verlage, 7. Auflage. ISBN 978-3-642-12769-4
- Bundesamt für Statistik. Struktur der ständigen Wohnbevölkerung nach Kanton, 1999-2020. Available from: https://www.bfs.admin.ch/bfs/de/home/statistiken/bevoelkerung/stand-entwicklung.assetdetail.18344208.html
- Bundesamt für Statistik. Hauptsprachen in der Schweiz. Available from: https://www.bfs.admin.ch/bfs/de/home/statistiken/bevoelkerung/sprachen-religionen/sprachen.assetdetail.15384655.html
- Ehrler F, Lebert F. Wissensstand und Haltung der Allgemeinbevölkerung zur Humanforschung und deren Regelungen 2018. Available from: https://www.bag.admin.ch/dam/bag/de/dokumente/biomed/forschung-am-menschen/forschung-biomedizin/Schlussbericht-Bevoelkerungsbefragung-Humanforschung.pdf.download.pdf/Schlussbericht-Bevoelkerungsbefragung-Humanforschung.pdf
- Johnsson L, Helgesson G, Rafnar T, Halldorsdottir I, Chia KS, Eriksson S, et al. Hypothetical and factual willingness to participate in biobank research. Eur J Hum Genet. 2010 Nov;18(11):1261–4. https://doi.org/10.1038/ejhg.2010.106
- Kalkman S, van Delden J, Banerjee A, et al. Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence. J Med Ethics. 2019 Nov.
- Richter G, Borzikowsky C, Hoyer BF, Laudes M, Krawczak M. Secondary research use of personal medical data: patient attitudes towards data donation. BMC Med Ethics. 2021 Dec;22(1):164. https://doi.org/10.1186/s12910-021-00728-x
- El Emam K, Rodgers S, Malin B. Anonymising and sharing individual patient data. BMJ. 2015 Mar;350 mar20 1:h1139. https://doi.org/10.1136/bmj.h1139
- Fedlex. Federal Act on Data Protection (FADP). Art. 4 and Art. 14. [11. February 2022]. Available from: https://www.fedlex.admin.ch/eli/cc/1993/1945_1945_1945/de#art_14
- Fedlex. Federal Act on Research involving Human Beings. Human Research Act, HRA. Art. 16. [11. February 2022]. Available from: https://www.fedlex.admin.ch/eli/cc/2013/617/en#art_16
- Griessbach A, Bauer A, Jörger Lebet F, Grossmann R. The concept of General Consent in Switzerland and the implementation at the University Hospital Zurich, a cross-sectional study. Swiss Med Wkly. 2022 Apr;152(15-16):w30159. https://doi.org/10.4414/smw.2022.w30159
- Richter G, Borzikowsky C, Lesch W, Semler SC, Bunnik EM, Buyx A, et al. Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany. Eur J Hum Genet. 2021 Mar;29(3):495–502. https://doi.org/10.1038/s41431-020-00735-3