Involving the public
Building a trustworthy national data research infrastructure – a UK-wide public dialogue
In January and February 2022, DARE UK and Kohlrabi Consulting carried out a public dialogue to explore views on how the UK’s data research infrastructure could work in a more joined-up, efficient and trustworthy way.
Recruitment and deliberative approach
44 members of the public from diverse backgrounds and identities in England, Northern Ireland, Scotland, and Wales were recruited to take part in a series of deliberative workshops. The dialogue aimed to deepen the public conversation around data research practices on a national scale and capture actions that could be adopted to address public views about how sensitive data is used for research.
Structure and schedule
Two initial workshops were conducted online over two days. Subsequently, a single follow-up workshop was held online, involving 10 participants from the two initial workshops. The follow-up workshop ensured that the initial workshops accurately captured participants’ views and expectations and translated them to actionable steps for the data research community to take forward.
Outputs
Google Jamboard was used as an interactive digital whiteboarding tool to enable workshop participants to share their thoughts and work together to deliberate on the topics explored.
Here, we have shared the workshops agendas and materials, as well as example Jamboards, in the hope that they may be useful to others exploring public attitudes towards the use of sensitive data in research and related issues. Explore the links below to access the materials used.
You can also view the full public dialogue report to find out more about the methodology and findings.
Workshops and resources
Full dialogue report
Initial workshops (13 and 14 January 2022) – Agenda
Follow-up workshop (22 February 2022) – Agenda
Presentation 1: Introduction and key concepts
Presentation 2: What is a trusted research environment (TRE)?
Presentation 3: The data journey, from collection to use in research (Wales example)
Presentation 4: Existing examples of public involvement and engagement with data research
Presentation: Summary of findings from initial workshops
Full dialogue report
Example Jamboard
Data research case studies
England breakout room: ‘An investigation into racial bias in court case outcomes in England and Wales’, Dr Angela Sorsby, University of Sheffield
http://Northern Ireland breakout room: ‘Air pollution and health in Northern Ireland’, Dr Babak Jahanshahi and Dr Neil Rowland, Queen’s University Belfast
Scotland breakout room: ‘Increased deaths at home in Scotland during COVID-19 pandemic’, Jan Savinc, Edinburgh Napier University
Wales breakout room: ‘HAPPEN Wales: The health and attainment of pupils in a primary evaluation network’, Dr Michaela James, University of Swansea
UK-wide case study presented to all participants: ‘Children and young people with type 1 diabetes: data linkage beyond health’, Dr Robert French, University of Cardiff
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