Linking patient data with human tissue samples in health research has the potential to offer significant medical advances, however it has the potential to raise questions of data privacy.
In March 2017, the Health Research Authority (HRA) and the Human Tissue Authority (HTA) partnered with the Department for Business, Energy and Industrial Strategy’s Sciencewise programme to run a public dialogue. The aim of the dialogue was to explore public participants’ views on consent procedures used by researchers to link patient data with human tissue samples in health research to inform new HRA and HTA guidance.
Reconvened public dialogue workshops of 75 public participants were held in London, Sheffield and Birmingham between 26th September and 21st October 2017. This approach allowed participants enough time to digest the information they received on the first day, and reflect on the topic outside of the workshop setting.
The dialogue delivery contractor was Ipsos MORI and the evaluator was 3KQ.
Policymakers from the HRA and HTA were optimistic about the usefulness of the dialogue as it was expected to help researchers design consent forms with public views in mind.
To learn more about how the HRA and HTA are using the findings of the dialogue see the HRA website news section.