What broad consent means for patients and the public

Participation in clinical trials asks a great deal of patients, and reuse means fewer people need to be recruited to answer questions existing data could already address. It also honours why many people take part to begin with – cancer patients are often motivated by something larger than their own care. They share a strong desire to contribute to future research and want to help others with the same diagnosis by advancing science beyond themselves. Broad consent lets researchers make good on that altruism, rather than letting precious data be siloed.

The increased statistical power of pooled datasets can generate insights into rare diseases, including paediatric cancers. Pooling data across trials also strengthens safety surveillance and risk detection, helping to identify rare adverse events that may only become apparent at scale. Greater opportunities for data validation can accelerate the development of more effective treatments and support the transition towards more personalised and equitable care. Crucially, broad consent for data reuse which includes commercial organisations can help translate scientific discovery into clinical impact by accelerating the pathway from basic research to patient-ready therapies.

Done openly, it also aligns with what the public increasingly expects: transparency and sound governance. Good broad consent is explicit from the outset about who may use the data (including commercial organisations) about why (for future, ethically approved research), and about what will never be shared (direct identifiers). That candour, set out plainly in the consent document, keeps downstream use aligned with participants expectations.

One piece of the puzzle

But the implementation of broad consent cannot rely on goodwill alone; it needs wording people can trust and use. Our ambition has been to create future-proof broad consent wording that maximises the impact of the data and samples collected in clinical research by making reuse a clear, available option.

The wording and its accompanying guidance were developed collaboratively with the Health Research Authority and a range of stakeholders, including our research nurses, clinical trial operations leaders, and patient and public involvement and engagement representatives, so that the language reflects both research need and the participant perspective.

That work now sits inside CRUK policy, and we encourage other funding agencies to adopt our approach. Our Recruitment of Human Participants policy, updated in April 2026, requires the research we fund to state clearly in its consent clauses that samples and data collected in a study may be shared with organisations inside and outside the UK, including commercial organisations, to support other health-related research in future.

The specific wording, and suggested guidance for the participant information sheet, are published alongside the policy. The clause for broad reuse is being piloted for Clinical Research Committee-funded awards this year and is strongly encouraged for all other grants.

The prize is simple to state and significant to realise: research data that goes on working long after the original study closes.

Broad consent is only one piece of the wider puzzle of responsible data sharing – but it is a foundational one, the permission that lets every other benefit follow. Get the wording right, and a single act of participation can echo through discoveries no one has thought of yet. That is a better return on the trust patients place in us, and on the data they help us gather.