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Dare UK

50 members of the public from all over the UK helped in creating recommendations to improve public confidence in research involving sensitive data

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Commissioned by Data and Analytics Research Environments UK (DARE UK), we designed and conducted a deliberative public dialogue to explore public perspectives on how the UK’s data research infrastructure could operate in a more integrated, efficient, and trustworthy manner.

 

Initiated by UK Research and Innovation (UKRI), DARE UK’s long-term goal is to develop a UK-wide digital infrastructure for sharing and using sensitive research data, which has the confidence and support of the public. To raise the challenge, they tasked us with finding people who had never participated in research before to ensure that the recommendations were inclusive of seldom heard voices. 

We recruited and trained peer researchers, individuals from various communities across the UK, to be part of our team. They assisted in recruiting participants and designing the workshops. The final sample of 46 participants was a balanced mix of gender, education, age, ethnicity, and country – exactly what DARE asked for. Most of the group had little awareness of the use of sensitive data in research and felt that they were not traditionally listened to by policy or decision-makers. 

 

We employed a deliberative methodology to facilitate a series of public dialogues, comprising full-day sessions where people came together to enhance their understanding of the use of sensitive data in research, and co-create their recommendations.

Feedback from participants highlighted their appreciation for being heard. They suggested tangible recommendations to allow researchers to realise public benefits through their work, all while ensuring public engagement and transparency regarding the use of their data. DARE UK have subsequently used the findings to design and deliver a trustworthy national data research infrastructure.

You can find more information about the project here.

 

For more information on the methodology and findings, follow this link.

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