UKCRC TDCC joins the UK Health Data Research Alliance
The UK Health Data Research Alliance is an independent alliance of leading healthcare and research organisations, which is coordinated by Health Data Research UK (HDR UK). The Alliance aims to establish best practice for the ethical use of UK health data for research at scale, accelerating health discoveries. Established in February 2019 and funded by the Industrial Strategy Challenge Fund, the Alliance now has 27 member organisations, each committed to making data accessible for responsible research and innovation for the benefit of patients across the UK.
New members join the Alliance
On Wednesday 8th January 2020, HDR UK annouced nine new members of the Alliance. UKCRC Tissue Directory and Coordination Centre (UKCRC TDCC) is one of these new members, as is the Avon Longitudinal Study of Parents and Children (ALSPAC), which runs the 'Children of the 90s' cohort study (and which won the 2018 UK Biobank of the Year award!). Other new Alliance members include Great Ormond Street NHS Foundation Trust, NIHR Clinical Research Network and a number of NHS trusts. Read the HDR UK news release.
Professor Andrew Morris, Director of Health Data Research UK and Chair of the Alliance Board, said:
“We are delighted to welcome these new members to join the UK Health Data Research Alliance. Each brings high value datasets as well as new approaches to developing tools and techniques to use diverse health data at scale to make improvements to people’s lives through research.”
What is the Alliance?
The Alliance develops and co-ordinates the adoption of tools, techniques, conventions, technologies, and designs that enable the use of health data in a trustworthy and ethical way for research and innovation. Its members formulate best practice and standards in areas such as privacy, transparency, public engagement, inclusivity and governance to ensure that health data is shared and used responsibly by researchers and innovators. Any requests to access data held by Alliance members for research and innovation will continue to go through the members' existing protocols to ensure strict security and data privacy.
What does joining the Alliance mean for UKCRC TDCC?
Phil Quinlan, Director of the UKCRC Tissue Directory and Coordination Centre, said:
“We are thrilled to be part of such an exciting endeavour and to see the UK's sample resources being represented in this consortium. Human sample resources (biobanks, cohorts, clinical trials, etc.) contain some of the richest datasets as well as biological samples making them an invaluable asset in health data research.
Our goals are:
- To make sample resources more discoverable
- To bring transparency across the research pathway in line with FAIR principles
- To ensure samples and data are used in research
We must never forget that members of the public and patients have donated samples and data in order to further advance our knowledge of disease and we must ensure we can deliver on their wishes. The UK Health Data Research Alliance is such a positive step in bringing the key national players together to make progress and to remove some of the fragmentation that hinders research and transparency.”