In January and February 2022, DARE UK and Kohlrabi Consulting carried out a public dialogue to explore views towards how the UK’s data research infrastructure could work in a more joined-up, efficient and trustworthy way.
A total of 44 members of the public from a diversity of backgrounds and identities from England, Northern Ireland, Scotland and Wales were recruited to take part in a series of deliberative workshops. The dialogue aimed to deepen public conversation around data research practices on a national scale and capture tangible actions that could be taken forward by those holding and using sensitive data for research in order to address public views.
Two initial workshops were held online over two days across Thursday 13 January and Friday 14 January 2022. A single follow-up workshop was then held online on Tuesday 22 February with a cross-section of 10 participants from the two initial workshops, to check that analysis of the initial workshops had accurately captured participants’ views and expectations. The follow-up workshop also aimed to bring those expectations to life through discussion of tangible actions that could be taken forward by the data research community to address them. You can find out more about the methodology and findings in the full Dialogue report.
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.
Initial workshops, 13 and 14 January 2022
- Workshop 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
- Example Jamboard
Data research case studies, Thursday 13 January
- England breakout room: ‘An investigation into racial bias in court case outcomes in England and Wales’, Dr Angela Sorsby, University of Sheffield
- 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
Research case study, Friday 14 January
- 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