Report summary

Clinical trial data sharing: what we’ve heard from researchers

Published

We want to make it easier for researchers to share and re-use clinical trial data. Together with Cancer Research UK, the Medical Research Council and the Bill and Melinda Gates Foundation, we ran a consultation to hear researchers’ views on current barriers and opportunities. 

What’s inside

  • perspectives on the challenges and opportunities in clinical trial data sharing, based on an online survey of 174 people working in the clinical trials community, and a workshop.

Who this is for

  • anyone involved in running clinical trials
  • anyone who uses secondary trial data 
  • policy makers
  • funders

Key findings 

  • Guidance and support: researchers need better guidance and support to share data, including training on how to de-identify data.
  • Standards: the research community needs to agree on universal standards, including data and meta-data standards, and acceptable levels of re-identification risk.
  • Cost: funders should cover the costs of sharing data, including data preparation and use of access committees, catalogues and repositories. It should be clear how researchers can ask for these costs. 
  • Recognition and incentives: funders should recognise data sharing more explicitly to incentivise researchers, and demonstrate that they value data as a research output. 
  • Principles and policies: we're committed to the FAIR principles and are signatories of the San Francisco Declaration on Research Assessment (DORA). We’ll continue to reflect this commitment in our funding policies. 

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