Fostering public trust in national health data platforms: key considerations for public involvement activities for England and Switzerland

Recent developments in national health data platforms have the potential to significantly advance medical research, improve public health outcomes, and foster public trust in data governance. Across Europe, initiatives such as the NHS Research Secure Data Environment in England and the Data Room for Health-Related Research in Switzerland are underway, reflecting examples analogous to the European Health Data Space in two non-EU nations. Policy discussions in England and Switzerland emphasize building public trust to foster participation and ensure the success of these platforms. Central to building public trust is investing efforts into developing and implementing public involvement activities. In this commentary, we refer to three national research programs, namely the UK Biobank, Genomics England, and the Swiss Health Study, which implemented effective public involvement activities and achieved high participation rates. The public involvement activities used within these programs are presented following on established guiding principles for fostering public trust in health data research. Under this lens, we provide actionable policy recommendations to inform the development of trust-building public involvement activities for national health data platforms.