Phenotypes and phenotype definitions are fundamental to health data research. They enable researchers to identify patient groups, build study cohorts, and generate insights that drive advances in treatment, prevention and public health. As the use of large-scale health data, including electronic health records, continues to grow, the importance of robust, high-quality computable phenotype definitions has never been greater.

However, researchers continue to face significant challenges. There are no widely agreed standards for developing, evaluating or sharing phenotype definitions, making it difficult to find, compare or reuse existing definitions.

Health Data Research UK (HDR UK) is convening a new initiative to address these challenges, bringing together researchers, clinicians, data scientists and infrastructure providers from across the UK. By facilitating collaboration and capturing a broad range of perspectives, HDR UK aims to enable a coordinated, community-led approach.

The goal is to develop a shared action plan for FAIR (Findable, Accessible, Interoperable and Reusable) phenotype definitions, including recommendations for best practice, improved metadata and reporting standards, and a clearer vision for the tools and platforms needed to support researchers. This will also ensure the UK contributes to international efforts to develop frameworks for computable phenotypes.

Spiros Denaxas, Professor of Biomedical Informatics, said:
“High-quality, shareable phenotype definitions are fundamental to unlocking the full potential of health data. By working together as a community to define standards and priorities, we have a real opportunity to transform how phenotyping supports research and ultimately improves patient outcomes. Input from researchers across the UK will be critical to making this a success.”

The survey is an important first step in this process. Collecting input from across the community will help to better understand current challenges, identify priorities, and ensure that proposed solutions are practical, relevant and widely adopted.

By taking part, you will help improve how phenotype definitions are created, shared and reused – supporting more efficient, reproducible and impactful health data research.

Complete the survey | Deadline: 24 May 2026