Health data reuse for good? Defining “public interest” in Switzerland

Under the European General Data Protection Regulation, public interest constitutes a legal basis for the secondary use of health data. In Switzerland, public interest similarly serves a justificatory role in the reuse of health data. Despite its normative and legal significance, the concept of “public interest” remains insufficiently defined. What does public interest mean in the context of health data reuse? How can it be assessed whether a specific project fulfils “public interest purposes”, particularly when commercial actors are involved? How must an expert committee be composed and institutionally anchored so that its decisions are accepted by the public and relevant data stakeholders?

Through a scoping review of a total of 118 academic publications, legislation, policy documents, guidelines and grey literature we (1) mapped existing definitions of data reuse “in the public interest”, “for public interest purposes”, and “with commercial intentions”; (2) developed criteria for assessing whether a data reuse project serves the public interest; and (3) identified framework conditions that ensure legitimate and publicly accepted decision-making. The findings were validated through two rounds of stakeholder consultations held in Bern (Switzerland) with 25 data participants including representatives from academia, public administration, the pharmaceutical industry, patient organizations, ethics committees, and the legal sector, to contextualize and refine the results for the Swiss setting. Finally, (4) we translated these findings into guideline for the establishment of a future National Data Coordination Office and related legislative initiatives. The resulting guideline provides an initial framework for evaluating secondary health data use projects “in the public interest”, supports the establishment of a National Data Coordination Office and related legislative initiatives, and advances the academic debate on the definition of public interest in this domain.

Key messages

• First systematic analysis of the concept of public interest in health data reuse, combining literature review with stakeholder input to clarify an otherwise opaque concept.

• A practical guide to assess whether health data reuse projects serve the public interest, developed in Switzerland, transferable across countries.