Building and maintaining public trust through transparent data access procedures is a key priority for both HDR UK and the UK Health Data Research Alliance (the ‘Alliance’). HDR UK Public Advisory Board members, who highlighted this as a priority area and have participated in a number of workshops and meetings on data access over the last year, noted a lack of consistency in relation to public and patient involvement in procedures for governing access to data.
The Public Advisory Board agreed to survey Alliance members about their current and future plans for involving patients and the public in data access approval procedures and, following analysis of the survey results, made a number of recommendations on how public and patient understanding of, and involvement in, data governance procedures should be improved in order to demonstrate trustworthiness. These recommendations were endorsed by the Alliance, with the group publishing a shared commitment to working towards to recommendations made by the Public Advisory Board. You can read a case study about the Public Advisory Board’s experiences here.
One of the key recommendations made was that the Alliance establish a forum to encourage shared learning across organisations, drawing on the views and experiences of patient/public members involved in existing approval processes, with a view to securing meaningful public involvement in all stages of the data lifecycle.
The first shared learning event took place on 1 November 2021, and we welcomed over 70 representatives from across the Alliance organisation, other data custodians and public contributors to share and discuss achievements, learnings and challenges in involving patients and the public in data access processes.
‘It’s clear that everybody here today is positive about the direction of travel in patient and public involvement in data access processes, and agrees that patients and the public have a right to be in this space. There are a range of different approaches across different organisations, and it will be key to ensure that, as an Alliance and wider data organisations in this ecosystem, we continue to work together to embed patient and public involvement in data access processes and keep public benefit at the heart of our decision making.’ – Debbie Keatley, HDR UK Public Advisory Board member.
Watch the full event recording below, and click the links to read our full event summary and the Q&A session. If you have any questions or ideas for progressing this work forward, please do contact Alice Dowden (Public Engagement and Involvement Officer, Alice.Dowden@hdruk.ac.uk).