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

• Published in: Swiss medical weekly Vol. 154; no. 1; p. 3538
• Main Authors: Ormond, Kelly E, Bavamian, Sabine, Becherer, Claudia, Currat, Christine, Joerger, Francisca, Geiger, Thomas R, Hiendlmeyer, Elke, Maurer, Julia, Staub, Timo, Vayena, Effy
• Format: Journal Article
• Language: English
• Published: Switzerland SMW supporting association (Trägerverein Swiss Medical Weekly SMW) 22.01.2024
• Subjects: Ecosystem; Humans; Information Dissemination; Privacy; Qualitative Research; Switzerland; Switzerland
• ISSN: 1424-3997; 1424-3997
• DOI: 10.57187/s.3538

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. This study aimed to assess the obstacles to Swiss health data sharing, including legal, ethical and logistical bottlenecks. 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. 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. 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.