One registry, many values: trade-offs in building a rare cancers data infrastructure

Background Investments in the development of innovations for health data sharing and reuse have accelerated. The successful development and use of such innovations depend not only on knowledge transfer but also on how the different professionals involved negotiate what they consider important and on the societal values they prioritize. Yet, little is currently known about the valuation work carried out in interdisciplinary teams. This study addresses this gap, by examining how different types of professionals articulate and negotiate core values in developing IDEA4RC, a health data ecosystem for rare cancers. Materials and methods We conducted a longitudinal qualitative study by deploying a co-creation approach based on Responsible Innovation principles in IDEA4RC. Data were collected via three workshops, 20 semistructured interviews, a survey, and participant observations at centers of expertise based in 3 countries. Data were analyzed thematically, with attention to how values were expressed, how their meaning and relevance changed over time, and how they informed decision making. Results The IDEA4RC participants grappled with three main value tensions: solidarity versus competition, collective stewardship versus autonomy, and efficiency versus quality. The tensions differed in intensity and consequence depending on regulatory contexts and governance structures. Far from being merely conceptual, these tensions actively shaped decisions regarding the design and governance of IDEA4RC. Conclusion The identification of underlying value tensions through co-creation work supports the development of a shared language, facilitates negotiation of divergent interests and expectations, and clarifies emerging responsibilities and constraints among contributors to projects focused on health data sharing and reuse.