We recognise the world of data science can sometimes feel complex and confusing, with messages and processes that are not always clear. That’s why we are committed to making it easier for everyone to get involved and help shape health data research in the UK. Our goal is to improve transparency, build public trust, and encourage shared decision-making throughout the research process. By including the voices of patients, carers, and the public, we aim to ensure health data research benefits everyone.

We have worked closely with our Public Advisory Group and other people involved in health data research to develop our strategic mission, vision, goals, and objectives. You can explore these in our draft Patient and Public Involvement and Engagement Strategy consultation document 2024-2028. This document outlines our proposed approach to involving you—our community—in our work.

Public consultation on draft plans

We ran a public consultation from 4 March to 21 April 2024, inviting patients, carers, the public, and anyone from across the UK to give their views on our draft strategy. During this time, we offered various ways to provide input, including survey, online workshops, focus group discussions and telephone interviews. Here is a brief overview of recommendations received:

  • Provide more detailed information on the delivery of the strategy, including case studies to add context and specific targets.
  • Ensure the strategy document is accessible and relatable.
  • Develop clear plans to reach and include a diverse range of voices, especially those who do not usually engage.
  • Understand, incorporate, and embrace cultural factors that affect research participation.
  • Ensure equal partnership in decision-making.
  • Maintain transparency in all information.
  • Launch a communication campaign showcasing positive case studies of the benefits of sharing health data for research purposes.

For a comprehensive view of our public consultation, including key findings, please use the following links:

What is next

We are now working towards integrating the feedback received and finalise our plans for the next four years, which, once completed, will be made available on this webpage.

Accessibility

If you need any of the information or documents provided in another language or format (such as easy read, large print, or audio) please email us at: involvement@hdruk.ac.uk

Contact us

Email: involvement@hdruk.ac.uk

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Thank you for helping us shape the future of health data research!