INVOLVING THE PUBLIC

We are committed to meaningfully involving the public in all aspects of our work.

WHY PUBLIC ENGAGEMENT MATTERS

We believe that the public, whose sensitive data is at the heart of what we do, must be included in the decisions that affect how their data is managed. By inviting members of the public to join our decision-making boards and provide feedback throughout the programme, we ensure that we are accountable and transparent. Our commitment to public benefit is reflected in our efforts to understand public interests and concerns, demonstrate trustworthiness, and integrate public involvement throughout our work.

PUBLIC DIALOGUES AND PARTNERSHIPS

DARE UK engages in dialogues with the public to better understand their perspectives on how public data is used for research. The programme also collaborates with partners and initiatives across the UK data research community to ensure transparency and public involvement in decisions related to public data use and protection.

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OUR PUBLIC CONTRIBUTORS

ANGELA COULTER

Member, 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 the 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.

CHRIS MONK

Member, 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 life. Outside of work, Chris is a long-standing volunteer with 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, 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 useMYdata. 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.

JOYCE FOX

Public Advisor, DARE UK Delivery Team

With personal experience as a carer, and with long-term health conditions, Joyce cares deeply about public involvement at all levels: in their own care, in service design and improvement, and in research. She has held a range of operational and strategic involvement roles with the National Institute for Health Research (NIHR), and other organisations locally, regionally and nationally. Joyce works closely with the DARE UK programme delivery team providing advise from a public perspective on key programme delivery activities and decisions.

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