Infrastructure and Services - Trust and Transparency
Lead Research Organisation:
Health Data Research UK
Department Name: UNLISTED
Abstract
HDR UK’s mission, to enable research that improves people’s lives, needs patients and the public to have confidence that their data is being used in safe and trustworthy ways. This programme enables the public to shape HDR UK’s work, demonstrating accountability, transparency and showing that research answers questions that are important to patients and the public.
By working with the public to understand their perspective on and shape research programmes HDR UK can build confidence in the way patient data is being used for research, ensuring the new tools and infrastructure developed is founded on public trust. This can bring together the needs of research and patients, in a way that benefits everyone.
By working with the public to understand their perspective on and shape research programmes HDR UK can build confidence in the way patient data is being used for research, ensuring the new tools and infrastructure developed is founded on public trust. This can bring together the needs of research and patients, in a way that benefits everyone.
Technical Summary
This work is funded by the UKRI Medical Research Council, UKRI Engineering and Physical Sciences Research Council, UKRI Economic and Social Research Council, Department of Health and Social Care, National Institute for Health Research (England), Chief Scientist Office (Scottish Government), Health and Care Research Wales, Public Health Agency HSC (Northern Ireland), British Heart Foundation and Cancer Research UK
To deliver HDR UK’s mission to enable data-driven research that improves people’s lives, patients and the public need to have trust and confidence in the safe, secure and trustworthy access to and use of their data. Ideally, patients will actively want their data to be used for research that improves and saves lives. However, the public response to the GP Data for Planning and Research (GPDPR) programme and rate of national data opt-outs demonstrates that members of the public have concerns about use of their data for purposes beyond their direct care. Demonstrating trustworthiness and building public confidence on a national scale in a complex data landscape is challenging but vital in order for the UK to achieve the potential of future research. To support this, HDR UK is committed to leading both meaningful involvement and engagement with the public and a robust, transparent, trustworthy and streamlined governance and ethics framework. These components will be co-delivered under the Trust and Transparency pillar.
Evidence has shown that active and meaningful patient and public involvement and engagement (PPIE) leads to more relevant and higher quality research studies. PPIE is particularly crucial in health data research to enable the sector to demonstrate a trustworthy approach to the access and use of data to patients, the public and practitioners. The ability to demonstrate transparent and robust data governance and ethics frameworks, built with meaningful PPIE, is also crucial to building and maintaining trust in the safe and secure use of data. Together the PPIE and Governance and Ethics workstreams will support data custodians in demonstrating accountability, transparency and trustworthiness and ensuring health data research is relevant, acceptable, appropriate, and answers questions of importance to patients and the public that are of public benefit.
Impact and legacy
By 2028, the vision for the Trust and Transparency pillar is for patients and the public to have trust and confidence in the safe, secure and trustworthy access to and use of their data in research.
To deliver HDR UK’s mission to enable data-driven research that improves people’s lives, patients and the public need to have trust and confidence in the safe, secure and trustworthy access to and use of their data. Ideally, patients will actively want their data to be used for research that improves and saves lives. However, the public response to the GP Data for Planning and Research (GPDPR) programme and rate of national data opt-outs demonstrates that members of the public have concerns about use of their data for purposes beyond their direct care. Demonstrating trustworthiness and building public confidence on a national scale in a complex data landscape is challenging but vital in order for the UK to achieve the potential of future research. To support this, HDR UK is committed to leading both meaningful involvement and engagement with the public and a robust, transparent, trustworthy and streamlined governance and ethics framework. These components will be co-delivered under the Trust and Transparency pillar.
Evidence has shown that active and meaningful patient and public involvement and engagement (PPIE) leads to more relevant and higher quality research studies. PPIE is particularly crucial in health data research to enable the sector to demonstrate a trustworthy approach to the access and use of data to patients, the public and practitioners. The ability to demonstrate transparent and robust data governance and ethics frameworks, built with meaningful PPIE, is also crucial to building and maintaining trust in the safe and secure use of data. Together the PPIE and Governance and Ethics workstreams will support data custodians in demonstrating accountability, transparency and trustworthiness and ensuring health data research is relevant, acceptable, appropriate, and answers questions of importance to patients and the public that are of public benefit.
Impact and legacy
By 2028, the vision for the Trust and Transparency pillar is for patients and the public to have trust and confidence in the safe, secure and trustworthy access to and use of their data in research.
