Infrastructure and Services - The UK Health Data Research Alliance and Hub Network
Lead Research Organisation:
Health Data Research UK
Department Name: UNLISTED
Abstract
Bringing together health related data and enabling researchers to improve people’s lives will require teamwork with experts across the UK. As it stands, the amount of variation in where and how health related information is stored is a significant obstacle to this game changing research. The Alliance has been active since 2019, bringing together NHS data holders, Universities, charities and industrial partners to identify common challenges and work together to enable better use of data. In the next five years Alliance membership will be extended to non data custodians and complementary groups, including Trade Assocations.
Alliance members play a central role in informing HDR UK’s activities in both building and improving the foundations to support health data research, enabling researchers to work in trustworthy ways across organisations and sources of health data, enabling research that has been impossible until now.
Alliance members play a central role in informing HDR UK’s activities in both building and improving the foundations to support health data research, enabling researchers to work in trustworthy ways across organisations and sources of health data, enabling research that has been impossible until now.
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
Uniting health data to enable discoveries that improve people’s lives will require deep collaboration among many communities and stakeholders to address the challenges of fragmentation, inconsistency and lack of standardisation that act as barriers to health data research.
HDR UK will build upon the success of the Alliance that was formed in 2019 as the forum to bring stakeholders together from around the UK to promote the development of high-quality standards, policies and tools based on community consensus. In the next five years HDR UK will continue to convene and grow the Alliance of UK data custodians, Health Data Research Hubs and academic centres NIHR Biomedical Research Centres, charities and partner organisations, and will include non data custodians and Trade Assocations, to establish and adopt best practice for the ethical use of UK health data for research at scale. The Alliance will identify common challenges and barriers to progress, develop and promote common solutions to overcome these barriers and convene the community regularly to share results and progress.
Alliance members will be supported to strengthen contributions to strategic planning for the health data infrastructure and technology ecosystem (actioned through HDR UK Infrastructure and Service and Driver Programme activities) and to leverage data and relationships. HDR UK will serve the Alliance to ensure it is 'member centric' and to support and enable Alliance activities with respect and authenticity. The impact will be to shape and enable all aspects of high-quality Research Data Infrastructure and Services and, ultimately, enable accredited health data scientists to work in a trustworthy way across organisational and infrastructure boundaries with minimal additional effort - within the UK and increasingly internationally.
Uniting health data to enable discoveries that improve people’s lives will require deep collaboration among many communities and stakeholders to address the challenges of fragmentation, inconsistency and lack of standardisation that act as barriers to health data research.
HDR UK will build upon the success of the Alliance that was formed in 2019 as the forum to bring stakeholders together from around the UK to promote the development of high-quality standards, policies and tools based on community consensus. In the next five years HDR UK will continue to convene and grow the Alliance of UK data custodians, Health Data Research Hubs and academic centres NIHR Biomedical Research Centres, charities and partner organisations, and will include non data custodians and Trade Assocations, to establish and adopt best practice for the ethical use of UK health data for research at scale. The Alliance will identify common challenges and barriers to progress, develop and promote common solutions to overcome these barriers and convene the community regularly to share results and progress.
Alliance members will be supported to strengthen contributions to strategic planning for the health data infrastructure and technology ecosystem (actioned through HDR UK Infrastructure and Service and Driver Programme activities) and to leverage data and relationships. HDR UK will serve the Alliance to ensure it is 'member centric' and to support and enable Alliance activities with respect and authenticity. The impact will be to shape and enable all aspects of high-quality Research Data Infrastructure and Services and, ultimately, enable accredited health data scientists to work in a trustworthy way across organisational and infrastructure boundaries with minimal additional effort - within the UK and increasingly internationally.
