C. Egher, S. van Hees, W. Boon, A. Trama and the IDEA4RC Working Group, “One registry, many values: trade-offs in building a rare cancers data infrastructure”, ESMO Rare Cancers, Articles in Press 100520 June 03, 2026. DOI: 10.1016/j.esmorc.2026.100520
Highlights
- Value tensions shape design and governance of rare cancers data ecosystems.
- Willingness to share rare cancers data is shaped by tensions between solidarity and competition.
- Collective stewardship of rare cancers data ecosystems requires balancing shared goals with autonomy.
- Balancing efficiency and quality is critical for sustainable rare cancers data sharing and reuse.
- Co-creation supports shared goals development and priorities alignment in complex data ecosystems.
Abstract
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.
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