Why this matters
Public benefit is the driving force of all we do. To achieve it, it is essential we fully understand the public’s interests and concerns. In addition, we want to demonstrate trustworthiness and show that we put public benefit at the heart of our strategy.
As such, we have recruited members of the public to sit on both the DARE UK Programme Board and Scientific and Technical Advisory Group, to provide valuable input into decision-making processes. We also have a Delivery Team Public Advisor, who we consult on our day-to-day activities to ensure public involvement is embedded across all aspects of our work. You can find out more about our public contributors below.
To find out about our upcoming public events, please see the News and Events page.
During Phase 1 of the DARE UK programme, in collaboration with Kohlrabi Consulting we ran a UK-wide public dialogue to explore views regarding what a more joined-up, efficient and trustworthy national data research infrastructure should look like.
A series of deliberative workshops was held with 44 members of the public from across England, Northern Ireland, Scotland and Wales in January and February 2022. The workshops explored issues related to data security, access and accreditation, trustworthiness and more.
- Participants had low existing awareness of how sensitive data is used in research, but showed widespread support for data research and were reassured by processes currently in place to protect their data. They wanted all types of researchers – including commercial organisations – to have access to their data when the proposed research is in the public benefit.
- However, participants were surprised by how long and hard it can be to access data and wanted to see these processes improved, so that public benefit can be realised more quickly.
- They also felt the public are currently left in the dark about data research. For it to be more trustworthy, they saw a clear need for data custodians and researchers to more proactively reach out and tell the public about what is being done with their data, how and why; and to meaningfully involve an inclusive public in their work.
The final report, published in May 2022, presents a set of six recommendations for the trustworthy handling and use of sensitive data in research. You can also view and download the workshop agendas and materials.
Our public contributors
Angela Coulter, member of the Programme Board
Angela Coulter is an NHS patient and a health services researcher with significant experience studying patient and public views of healthcare, their experiences and outcomes. She has published more than 350 academic papers, reports, books and book chapters, and was founding editor of Health Expectations, the first academic journal to focus on patient and public involvement. Now semi-retired, but still involved in research and policy analysis, Angela’s previous roles include chief executive of Picker Institute Europe and director of the Health Services Research Unit at the University of Oxford. She lives in an Oxfordshire village.
John Marsh, member of the Programme Board
John has a background in building consumer data companies, but took no interest in health data until he was diagnosed with bowel cancer in 2008 through the Screening Programme. Now he is a firm believer in the potential for data-driven approaches to prevention and early diagnosis of clinical problems. His particular interest is in helping to ease the technical and administrative barriers between legitimate research projects and the health and wider data they need, which drove his desire to contribute to DARE UK.
Chris Monk, member of the Scientific and Technical Advisory Group
Chris is the COO of Decoded, a company that teaches people about data science and technology. He is passionate about the power of data to transform the way that we do things in business and in life. Outside of work, Chris is a long-standing volunteer with both St. John’s Ambulance and South Central Ambulance Service, where he sees first hand the primary care needs of the public that he believes could be better met by more effective use of data. Chris is also passionate about the ‘big questions’ relating to the use of data for health research, in particular how the public can be persuaded to share their data and how the privacy of data subjects can be safeguarded.
Maisie McKenzie, member of the Scientific and Technical Advisory Group
Maisie’s experiences as a carer for multiple family members with serious medical conditions led to an interest in public involvement and patient engagement. She currently supports two of the National Institute for Health Research policy research units as a patient representative on its collaboration groups, which focus on data use in research and clinical trials, and is a member of use MY data. Maisie has worked in operational management, health promotion and disease prevention for the NHS in a non-clinical capacity. She currently works as an adult mental health first aid associate and trainer with Mental Health First Aid England.