Policy Significance Statement

This commentary aims to inform ongoing policy discussions and activities related to fostering public trust in national health data platforms. Drawing on trust-building guiding principles applied to three national research programs, this commentary outlines policy recommendations for developing public involvement activities that foster public trust. The application of these recommendations in public involvement activities can foster legitimacy and broader participation in national health data platforms.

2. Trust-building public involvement activities in national research programs

To inform the development of trust-building public involvement activities for national health data platforms, we refer to three nationwide research programs: UK Biobank (UK Biobank, 2024a), Genomics England (Genomics England, 2024), and the Swiss Health Study (SHeS) (Bühler et al., Reference Bühler, Frahsa, Morand Bourqui, Von Götz, Bochud and Panese2024; Swiss Biobanking Platform, 2024; Swiss Health Study, 2024). These programs are notable examples of recent health data sharing initiatives that implemented public involvement activities that contributed to their overall success (Samuel and Farsides, Reference Samuel and Farsides2018). Similar to national health data platforms, these research programs are national initiatives aimed at enabling novel research by providing access to health-related data. However, the research programs provide access to health-related data from long-term studies only, while health data platforms aim to provide access to health-related data from various sources.

UK Biobank, established in 2007, and Genomics England, established in 2013, are two successful long-term national research programs, which collect and provide access to vast amounts of data ranging from genomics data to data on health exposures, interactions, and outcomes. In UK Biobank, this data has also been linked to established datasets, including cancer registries and primary care records (Conroy et al., Reference Conroy, Lacey, Bešević, Omiyale, Feng, Effingham, Sellers, Sheard, Pancholi, Gregory, Busby, Collins and Allen2023; Pavey et al., Reference Pavey, Kulkarni, Wood, Ben-Shlomo, Sever, McEniery and Wilkinson2022; UK Biobank, 2023a, 2024b). These projects have resulted in the publication of thousands of scientific papers and have facilitated the successful involvement of global collaborators and industry (Pfizer, 2022; Regeron, 2018; UK Biobank, 2022), whilst maintaining stable public participation (Sudlow et al., Reference Sudlow, Gallacher, Allen, Beral, Burton, Danesh, Downey, Elliott, Green, Landray, Liu, Matthews, Ong, Pell, Silman, Young, Sprosen, Peakman and Collins2015; Tyrrell et al., Reference Tyrrell, Zheng, Beaumont, Hinton, Richardson, Wood, Davey Smith, Frayling and Tilling2021; UK Biobank, 2024c). A key contributor to the success of these programs has been the meaningful involvement of the public, with activities ranging from the inclusion of citizens on advisory and ethics committees to the provision of in-person and online contact portals for participants and the public (Levitt, Reference Levitt2005; UK Biobank, 2023b).

The SHeS, established in 2020, is a large-scale precision public health cohort led by the Swiss Federal Office of Public Health in collaboration with the Swiss Biobanking Platform and academic institutions in Switzerland (Bühler et al., Reference Bühler, Frahsa, Morand Bourqui, Von Götz, Bochud and Panese2024; Swiss Biobanking Platform, 2024; Swiss Health Study, 2024). The pilot phase of the SHeS was completed in 2022, which demonstrated the feasibility of the population cohort at the national level. The program’s participation rate surpassed that of similar population-based studies in neighboring countries, which can in part be attributed to the program’s implementation of a public involvement strategy (Bourqui et al., Reference Bourqui, Nusslé, von Goetz, Veys-Takeuchi, Zuppinger, Boulez, Bühler, Chapatte, Currat, Dousse, Faivre, Franco, Virzi, Bourqui-Pittet and Bochud2023; Bühler, Reference Bühler2023; Bühler et al., Reference Bühler, Frahsa, Morand Bourqui, Von Götz, Bochud and Panese2024). The gained insights from the pilot informed the inclusion of public involvement activities within the governance of the SHeS to be applied in its future scaling-up stages (Bühler, Reference Bühler2023).

By applying the guiding principles on fostering public trust in personal data use in health research by Gille et al. (Reference Gille, Smith and Mays2022), we provide an overview of the public involvement activities used by the three national research programs under the lens of public trust (Table 1). This perspective can inform the development of future public involvement activities that can build public trust in health data sharing initiatives and, in turn, contribute to their success.

Table 1.

Public involvement activities displayed within guiding principles to foster public trust in national research programs

^a The public interest and work toward realizing a net benefit for the health system and the public constructs of the guidance framework were merged due to thematic similarities.

Stable levels of participation in the UK Biobank and Genomics England suggest that their comprehensive approaches to involving the public at various stages of the programs may have contributed to their success. Public involvement activities that contributed to building public trust in the programs include, but are not limited to, their initiatives to co-design the contents of their promotional material and recruitment strategies, their seeking public feedback during the programs’ setup, and adapting public involvement activities to local circumstances to meaningfully involve underserved communities across England. Both research programs maintain regular updates and contact portals for participants and the public, along with lay committees that decide on various aspects of the research conducted through the programs.

Similarly, high participation in the SHeS pilot, and the expressed interest of its participants to take part in the program as it scales up, suggest that trust building measures identified within the program’s public involvement activities may contribute to the program’s success after the pilot. Activities within the SHeS focused on engaging the public during the pilot program to gather information on their needs for the national research program and their involvement expectations during scale up. This demonstrates a commitment to build trust and inform meaningful public involvement from the outset. The program also focused on the early inclusion of citizens on advisory and ethics committees, and provided regular updates on the study’s progress.

Overall, these programs meaningfully involved the public in shaping inclusive and patient-centered research. By exploring the public involvement activities of these programs using the guiding principles proposed by Gille et al. (Reference Gille, Smith and Mays2022), those that played a prominent role in trust-building are made evident. Applying these guiding principles to inform the design of public involvement activities in other data sharing initiatives can be instrumental in building public trust and, consequently, contributing to the success of those programs.

3. What can national health data platforms learn from national research programs about public involvement that fosters public trust?

National health data platforms from England and Switzerland, the NHS Research SDE Network (NHS England, 2024; NHS England Digital, 2024), and the Swiss Data Room for Health-Related Research (Federal Office of Public Health, 2024b; hereafter referred to as the Swiss health data space), respectively, are designed to offer health data in secure environments for secondary use by researchers and trusted organizations. These countries are recognized for their innovation in the healthcare sectors compared to other European countries (Lawton Smith et al., Reference Lawton Smith, Bagchi-Sen and Edmunds2016) and are spearheading the development of their own national health data platforms alongside the European Health Data Space, despite not participating in the initiative itself (European Commission, 2024).

Integral to the development of both countries’ national health data platforms is their commitment to fostering public trust through public involvement activities. In England, this commitment is evident through the government’s launch of the “Data Saves Lives” strategy, which acknowledges the crucial role of public trust in data sharing through SDEs by fostering transparency, security, and public benefit (Department of Health and Social Care, 2022). Notably, this strategy includes a dedicated fund for public involvement activities, which are currently ongoing. In Switzerland, the Swiss health data space is part of the Digisanté strategy to promote the digital transformation of the healthcare system (Federal Council, 2024; Federal Office of Public Health, 2024a). As part of the government’s health policy strategy for the initiative, there is explicit emphasis on the need to build public trust in the reliability and security of data collection, storage, and exchange. For the Swiss health data space, this translated to a public involvement activity in the form of a national study aimed at informing its trustworthy development (Daniore et al, Reference Daniore, Zavattaro and Gille2024).

When referring to the initial public involvement activities conducted so far by both countries, common themes emerge around the public’s requirements to trust their respective national health data platforms. Overall, members of the public perceive health data platforms as more trustworthy conditional on them delivering on their promised higher levels of transparency and security, compared to other data sharing initiatives (Goldacre and Morley, Reference Goldacre and Morley2022). Several factors influence the perceived trustworthiness of health data platforms. These include the public benefit of the research, accountability measures for data misuse, the ability of the public to opt into, or out of, the platform, and the representativeness of their advisory groups (Harkness et al., Reference Harkness, Blodgett, Rijneveld, Waind, Amugi and McDonanld2022). Special emphasis on trustworthiness is placed on access control of the data, with public support evident for actors from health systems, academia, and national charities. Comparatively, commercial companies lack such support (Ghafur et al., Reference Ghafur, Dael, Leis, Darzi and Sheikh2020; The Health Foundation, 2023), with members of the public citing concerns about data privacy, security, and potential misuse of sensitive data (Ruparel et al., Reference Ruparel, Lee, Horner, Fox, Carruthers and Tarafdar2023; Department for Science, Innovation and Technology, 2024).

As developments progress on both national health data platforms, it is important that future public involvement activities are meaningfully developed and implemented to ensure that they foster public trust in these initiatives. Along with applying our suggested approach in Table 1 to design trust-building public involvement activities, we recommend that policymakers critically assess how effective these activities are at building public trust. We propose guiding recommendations (Table 2) to facilitate this assessment by synthesizing the key principles from Gille et al. (Reference Gille, Smith and Mays2022) that are most relevant to national research programs (Table 1). These guiding recommendations are supported by strategies for their implementaction based on referenced PPI work conducted for the national health data platforms in England (Goldacre and Morley, Reference Goldacre and Morley2022; Harkness et al., Reference Harkness, Blodgett, Rijneveld, Waind, Amugi and McDonanld2022) and Switzerland (Daniore et al, Reference Daniore, Zavattaro and Gille2024). The recommendations and strategies described in Table 2 can assist with the critical development, monitoring, and assessment of public involvement activities for national data health platforms that the public can trust.

Table 2.

Guiding recommendations for trust-building public involvement activities from national research program learnings

Alongside the recommendations and strategies for trust-building public involvement activities proposed in Table 2, it is important to consider these within the context of current factors that may affect their implementation. For example, feedback from citizens and patients in the advisory group on the “Data Saves Lives” strategy in England has highlighted that meaningful public involvement in co-designing a Data Pact for national data platforms requires significantly higher time investments than anticipated, with multiple discussions rounds among relevant stakeholders needed to effectively build public trust (Latta, Reference Latta2023; NHS England, 2023). In Switzerland, implementation challenges are more pronounced compared to England as there have been fewer efforts to prioritize public involvement activities in the national health data platform. This commentary introduces the first undertaken public involvement activity to inform the trustworthy development of the Swiss health data space (Daniore et al, Reference Daniore, Zavattaro and Gille2024). However, the main challenge for Switzerland will be to develop and implement a unified, meaningful, and reciprocal public involvement approach that both informs the development of the national health data platform and fosters public trust.

More generally for national health data platforms, there are additional implementation factors to consider, such as the need to include underrepresented and marginalized groups to ensure their voices are heard and their needs are addressed. Establishing clear processes for integrating public feedback into the national health data platforms and the research studies conducted from them is also essential, while also demonstrating how public input influences decisions and outcomes. Furthermore, continuous evaluation of public involvement strategies is crucial to assess whether they contribute to increased public trust in the health data platforms. This can be achieved through regular assessments using both quantitative and qualitative metrics, such as trust performance indicators, with adjustments made based on feedback and evolving circumstances (Gille et al., Reference Gille, Daniore and Zavattaro2024). By accounting for these factors during implementation, national health data platforms can build public trust, while fostering collaboration and contributing to more impactful research outcomes.