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Original article

Vol. 154 No. 1 (2024)

What are the bottlenecks to health data sharing in Switzerland? An interview study

  • Kelly E. Ormond
  • Sabine Bavamian
  • Claudia Becherer
  • Christine Currat
  • Francisca Joerger
  • Thomas R. Geiger
  • Elke Hiendlmeyer
  • Julia Maurer
  • Timo Staub
  • Effy Vayena
DOI
https://doi.org/10.57187/s.3538
Cite this as:
Swiss Med Wkly. 2024;154:3538
Published
22.01.2024

Summary

BACKGROUND: While health data sharing for research purposes is strongly supported in principle, it can be challenging to implement in practice. Little is known about the actual bottlenecks to health data sharing in Switzerland.

AIMS OF THE STUDY: This study aimed to assess the obstacles to Swiss health data sharing, including legal, ethical and logistical bottlenecks.

METHODS: We identified 37 key stakeholders in data sharing via the Swiss Personalised Health Network ecosystem, defined as being an expert on sharing sensitive health data for research purposes at a Swiss university hospital (or a Swiss disease cohort) or being a stakeholder in data sharing at a public or private institution that uses such data. We conducted semi-structured interviews, which were transcribed, translated when necessary, and de-identified. The entire research team discussed the transcripts and notes taken during each interview before an inductive coding process occurred.

RESULTS: Eleven semi-structured interviews were conducted (primarily in English) with 17 individuals representing lawyers, data protection officers, ethics committee members, scientists, project managers, bioinformaticians, clinical trials unit members, and biobank stakeholders. Most respondents felt that it was not the actual data transfer that was the bottleneck but rather the processes and systems around it, which were considered time-intensive and confusing. The templates developed by the Swiss Personalised Health Network and the Swiss General Consent process were generally felt to have streamlined processes significantly. However, these logistics and data quality issues remain practical bottlenecks in Swiss health data sharing. Areas of legal uncertainty include privacy laws when sharing data internationally, questions of “who owns the data”, inconsistencies created because the Swiss general consent is perceived as being implemented differently across different institutions, and definitions and operationalisation of anonymisation and pseudo-anonymisation. Many participants desired to create a “culture of data sharing” and to recognise that data sharing is a process with many steps, not an event, that requires sustainability efforts and personnel. Some participants also stressed a desire to move away from data sharing and the current privacy focus towards processes that facilitate data access.

CONCLUSIONS: Facilitating a data access culture in Switzerland may require legal clarifications, further education about the process and resources to support data sharing, and further investment in sustainable infrastructureby funders and institutions.

References

  1. Institute of Medicine (US). The Benefits of Data Sharing. US: National Academies Press; 2013.
  2. Coman Schmid D, Crameri K, Oesterle S, Rinn B, Sengstag T, Stockinger H; BioMedIT network team. SPHN - the BioMedIT network: A secure IT platform for research with sensitive human data. Stud Health Technol Inform. 2020 Jun;270:1170–4.
  3. ELSI projects [Internet]. SPHN. SPHN - Swiss Personalized Health Network; 2019 [cited 2023 Sep 16]. Available from: https://sphn.ch/network/projects-old/elsi-projects/
  4. 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. 10.1371/journal.pone.0249141 DOI: https://doi.org/10.1371/journal.pone.0249141
  5. Brall C, Berlin C, Zwahlen M, Vayena E, Egger M, Ormond KE. Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey. BMJ Open. 2022 Aug;12(8):e060844. 10.1136/bmjopen-2022-060844 DOI: https://doi.org/10.1136/bmjopen-2022-060844
  6. Pletscher F, Mändli Lerch K, Glinz D. Willingness to share anonymised routinely collected clinical health data in Switzerland: a cross-sectional survey. Swiss Med Wkly. 2022 Jun;152(2324):w30182. 10.4414/SMW.2022.w30182 DOI: https://doi.org/10.4414/SMW.2022.w30182
  7. Geneviève LD, Martani A, Perneger T, Wangmo T, Elger BS. Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders. Front Public Health. 2021 May;9:669463. 10.3389/fpubh.2021.669463 DOI: https://doi.org/10.3389/fpubh.2021.669463
  8. Geneviève LD, Martani A, Elger BS, Wangmo T. Individual notions of fair data sharing from the perspectives of Swiss stakeholders. BMC Health Serv Res. 2021 Sep;21(1):1007. 10.1186/s12913-021-06906-2 DOI: https://doi.org/10.1186/s12913-021-06906-2
  9. Creswell JW, Poth CN. Qualitative Inquiry and Research Design: Choosing Among Five Approaches. SAGE Publications; 2016. 488 pp.
  10. Grady MP. Qualitative and Action Research: A Practitioner Handbook. Phi Delta Kappa International; 1998. 55 pp.
  11. Auffray C, Balling R, Barroso I, Bencze L, Benson M, Bergeron J, et al. Making sense of big data in health research: towards an EU action plan. Genome Med. 2016 Jun;8(1):71. 10.1186/s13073-016-0323-y DOI: https://doi.org/10.1186/s13073-016-0376-y
  12. Tacconelli E, Gorska A, Carrara E, Davis RJ, Bonten M, Friedrich AW, et al. Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response. Lancet Reg Health Eur. 2022 Oct;21:100467. 10.1016/j.lanepe.2022.100467 DOI: https://doi.org/10.1016/j.lanepe.2022.100467
  13. Gaudet-Blavignac C, Raisaro JL, Touré V, Österle S, Crameri K, Lovis C. A National, Semantic-Driven, Three-Pillar Strategy to Enable Health Data Secondary Usage Interoperability for Research Within the Swiss Personalized Health Network: methodological Study. JMIR Med Inform. 2021 Jun;9(6):e27591. 10.2196/27591 DOI: https://doi.org/10.2196/27591
  14. The SPHN Semantic Interoperability Framework [Internet]. SPHN. SPHN - Swiss Personalized Health Network; 2020 [cited 2023 Sep 16]. Available from: https://sphn.ch/network/data-coordination-center/the-sphn-semantic-interoperability-framework/
  15. Anger M, Wendelborn C, Winkler EC, Schickhardt C. Neither carrots nor sticks? Challenges surrounding data sharing from the perspective of research funding agencies-A qualitative expert interview study. PLoS One. 2022 Sep;17(9):e0273259. 10.1371/journal.pone.0273259 DOI: https://doi.org/10.1371/journal.pone.0273259
  16. Vayena E, Blasimme A. Health Research with Big Data: Time for Systemic Oversight. J Law Med Ethics. 2018 Mar;46(1):119–29. 10.1177/1073110518766026 DOI: https://doi.org/10.1177/1073110518766026
  17. Lynch F, Meng Y, Best S, Goranitis I, Savulescu J, Gyngell C, et al. Australian public perspectives on genomic data storage and sharing: Benefits, concerns and access preferences. Eur J Med Genet. 2023 Jan;66(1):104676. 10.1016/j.ejmg.2022.104676 DOI: https://doi.org/10.1016/j.ejmg.2022.104676
  18. Middleton A, Milne R, Howard H, Niemiec E, Robarts L, Critchley C, et al.; Participant Values Work Stream of the Global Alliance for Genomics and Health. Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data. Eur J Hum Genet. 2020 Apr;28(4):424–34. 10.1038/s41431-019-0550-y DOI: https://doi.org/10.1038/s41431-019-0550-y
  19. 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(1516):w30159. 10.4414/SMW.2022.w30159 DOI: https://doi.org/10.4414/SMW.2022.w30159
  20. Portal SM. New federal act on data protection (nFADP) [Internet]. [cited 2023 Sep 16]. Available from: https://www.kmu.admin.ch/kmu/en/home/facts-and-trends/digitization/data-protection/new-federal-act-on-data-protection-nfadp.html
  21. Privacy Law [Internet]. [cited 2023 Sep 16]. Available from: https://swissprivacy.law/wp-content/uploads/2021/02/20210211-Tableau-comparatif-nLPD-et-RGPD.pdf
  22. Federal Data Protection, Information Commissioner (FDPIC). FDPIC Adequacy Decision [Internet]. [cited 2023 Sep 16]. Available from: https://www.edoeb.admin.ch/edoeb/en/home/datenschutz/international/angemessenheit.html
  23. Liddell K, Simon DA, Lucassen A. Patient data ownership: who owns your health? J Law Biosci. 2021 Oct;8(2):lsab023. 10.1093/jlb/lsab023 DOI: https://doi.org/10.1093/jlb/lsab023
  24. Xafis V, Labude MK. Openness in Big Data and Data Repositories: The Application of an Ethics Framework for Big Data in Health and Research. Asian Bioeth Rev. 2019 Oct;11(3):255–73. 10.1007/s41649-019-00097-z DOI: https://doi.org/10.1007/s41649-019-00097-z
  25. Chevrier R, Foufi V, Gaudet-Blavignac C, Robert A, Lovis C. Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: scoping Review. J Med Internet Res. 2019 May;21(5):e13484. 10.2196/13484 DOI: https://doi.org/10.2196/13484
  26. Scheibner J, Raisaro JL, Troncoso-Pastoriza JR, Ienca M, Fellay J, Vayena E, et al. Revolutionizing Medical Data Sharing Using Advanced Privacy-Enhancing Technologies: Technical, Legal, and Ethical Synthesis. J Med Internet Res. 2021 Feb;23(2):e25120. 10.2196/25120 DOI: https://doi.org/10.2196/25120
  27. Access to Health Data [Internet]. HDR UK. 2020 [cited 2023 Jan 13]. Available from: https://www.hdruk.org/access-to-health-data/
  28. Gudi N, Kamath P, Chakraborty T, Jacob AG, Parsekar SS, Sarbadhikari SN, et al. Regulatory Frameworks for Clinical Trial Data Sharing: scoping Review. J Med Internet Res. 2022 May;24(5):e33591. 10.2196/33591 DOI: https://doi.org/10.2196/33591
  29. Tenopir C, Dalton ED, Allard S, Frame M, Pjesivac I, Birch B, et al. Changes in Data Sharing and Data Reuse Practices and Perceptions among Scientists Worldwide. PLoS One. 2015 Aug;10(8):e0134826. 10.1371/journal.pone.0134826 DOI: https://doi.org/10.1371/journal.pone.0134826
  30. Popkin G. Data sharing and how it can benefit your scientific career. Nature. 2019 May;569(7756):445–7. 10.1038/d41586-019-01506-x DOI: https://doi.org/10.1038/d41586-019-01506-x
  31. Bierer BE, Crosas M, Pierce HH. Data Authorship as an Incentive to Data Sharing. N Engl J Med. 2017 Jul;377(4):402. 10.1056/NEJMc1707245 DOI: https://doi.org/10.1056/NEJMc1707245
  32. Joining up the dots: driving innovation, research and planning through Trusted Research Environments [Internet]. NHS Transformation Directorate. [cited 2023 Jan 13]. Available from: https://transform.england.nhs.uk/blogs/joining-up-the-dots-driving-innovation-research-and-planning-through-trusted-research-environments/
  33. QSR International Pty Ltd. (2020) NVivo (released in March 2020), https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home

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