The UK Health Data Research Alliance (‘Alliance’)
The Alliance is an independent consortium of leading healthcare and research organisations united to establish best practice for the ethical use of UK health data for research at scale. Patients and the public are involved across the different organisations in the Alliance, and you can learn more about this by viewing the summary document below.
Data and Connectivity National Core Study
Data and Connectivity –led by Health Data Research UK (HDR UK) in partnership with Office for National Statistics (ONS)– connects UK health data to support and accelerate research on COVID-19, enabling streamlined data access and analysis for COVID-19.
There are currently two Lay Members who sit on the Data and Connectivity Delivery Group and a wider Advisory Group of three lay members works alongside the Delivery Group. The objectives of the lay members on the Delivery Group and the Advisory Group are to raise any concerns and help shape the development and delivery of the programme.
The UK trusted and connected Data and Analytics Research Environments programme (DARE UK) aims to design and deliver a national data research infrastructure that is joined-up, demonstrates trustworthiness and supports research at scale for public good.
DARE UK is in the early stages of development, and during this first phase of the programme they will be running a series of public involvement workshops to get to the depth of public views regarding what a trusted and connected national data research infrastructure should look like.
They currently have two Public Contributors on their Programme Board, and two Public Contributors on their Scientific and Technical Advisory Group.
The Health Data Research Innovation Gateway (‘Gateway’) and Infrastructure Advisory Group (IAG)
The Gateway provides a common entry point to discover and request access to health information (health data) held within UK health datasets. The Gateway does not hold or store any health data. It allows researchers to see descriptions (metadata) of health datasets available in the UK so that they can request access to them for research.
Patients and the public are continually involved in development of the Gateway, through helping to develop resources and tools, and ensuring that information on the website is accessible to patients and the public.
We also have the The infrastructure advisory group (IAG), which provides strategic advice to Health Data Research UK and the UK Health Data Research Alliance to guide the development of the Gateway. There is currently one public contributor as part of their group.