Members of the public including patients have been consulted throughout the application process to set up UKSTORE. The participants were recruited via useMYdata, DATACAN, Leeds Research Owls, Candlelighters, Children’s Cancer and Leukaemia Group and Teenage Cancer Trust. Twelve young people aged 13-18 and seven adults, including three parents of children who had undergone ovarian or testicular tissue preservation, attended the consultations.
The consultation included virtual meetings to explore people’s views on data capture and data use for UKSTORE, as well as multiple choice questions, online chat functions and/or verbal discussion.
The consultations showed that the majority of peope understood the importance of whole population data registries and would be happy for their data to be captured without consent, including data linkage and retention.
We are grateful to all the participants who kindly took part in the consultation, and we are pleased that they have agreed to continue to advise UKSTORE as the project develops.
