We welcome two more industry trade associations to the UK Health Data Research Alliance, along with a research centre, home to four national longitudinal cohort studies, a medical research charity, two programme investors and one research support service.
The seven new members are:
- Association of British HealthTech Industries (ABHI) supports the HealthTech community and plays a key role in supporting delivery of healthcare. Members, including both multinationals and small and medium sized enterprises (SMEs), provide products and services that help to save and enhance lives. ABHI also represent the industry to stakeholders, such as the government, NHS and regulators.
- techUK is the technology trade association that brings together people, companies and organisations to realise the positive outcomes of what digital technology can achieve. With around 1000 members across the UK, techUK creates a network for innovation and collaboration across business, government and stakeholders to provide a better future for people, society, the economy and the planet.
- Centre for Longitudinal Studies (CLS) is home to several national longitudinal cohort studies; the four core studies are the 1958 National Child Development Study, the 1970 British Cohort Study, Next Steps, and the Millennium Cohort Study. CLS is part of the UCL Social Research Institute and funded by the Economic and Social Research Council.
- Action Against Age-related Macular Degeneration (AAAMD) is a research charity whose mission is to find and enable convenient, affordable, and accessible solutions to stop AMD in its early stages, before it causes sight loss.
- Administrative Data Research UK (ADR UK) is made up of four national partnerships (ADR England, ADR Northern Ireland, ADR Scotland and ADR Wales), and the Office for National Statistics (ONS). This partnership is transforming the way researchers access the UK’s wealth of public sector data, to enable better informed policy decisions that improve people’s lives.
- MRC Regulatory Support Centre provides support and guidance on the legal and ethical requirements for research involving human participants, their tissues, or data. They work with the academic research community to support high quality research and ensure policy makers hear the voice of the researcher.
- The Professional Records Standards Body (PRSB) is a UK organisation that was established in 2013 and is dedicated to the development of standards in health and social care to improve the patient experience and help save lives.
These seven new organisations bring growth and strength to the Alliance membership. We look forward to working with them, alongside our existing network of partners, to develop common standards, best practices and tools to accelerate trustworthy access and use of health-related data for research and innovation.
Peter Ellingworth, Chief Executive at ABHI, said:
“Well curated, secure and trusted health data is a vital resource for industry to work with healthcare stakeholders to develop innovations that save lives, manage the burden of disease, and support the efficient use of health resources. ABHI has worked with HDR UK since their inception, and we are delighted to formalise this relationship through membership of the UK Health Data Research Alliance. We look forward to continuing this partnership, so that together, we can support the development of the best HealthTech solutions for UK patients.”
Matt Evans, Director of Markets at techUK, said:
“techUK is delighted to be joining the UK Health Data Research Alliance, representing the health and care technology industry in important discussions about how to make the UK home to data-driven research, scientific advances, and innovation in healthcare to improve patient outcomes.
Industry have an important role to play in ensuring that the UK fully realises the potential of health data for research and innovation whilst maintaining trust. We are at the forefront of issues in digital and data ethics, shaping the conversation about how we can seize this moment to build the right policy, governance and regulatory frameworks to ensure responsible use of digital, data, and technology.”
Alissa Goodman, Director of Centre for Longitudinal Studies, said:
“At the Centre for Longitudinal Studies we are delighted to join the UK Health Data Research Alliance. This will support our core strategy to make the social and health research data from our UK birth cohort studies as discoverable and accessible as possible to a wide research community. The Alliance plays a crucial role in promoting the visibility and use of UK research data resources, and we are excited be part of this community and to actively collaborate in its development.“
Dr Emma Gordon, Director of ADR UK and ADR England said:
“I’m proud for ADR UK to join the Alliance. We are strong advocates for the responsible use of health data for public good research. There is huge potential for securely linking health data to other public sector data such as education, housing, or employment data to support research on the wider determinants of health. We must do this in a trustworthy way, and allow researchers to analyse at scale the influence people’s social and environmental characteristics have on their health.”
Lorraine Foley, CEO at the PRSB, said:
“We are pleased to have joined the UK Health Data Research Alliance. This is an important step for us and our strategy as we aim to build understanding of the value of PRSB standards to research and ensure that data for research and data for care are more closely aligned, so that the potential benefits of health research make a tangible difference to people’s health and wellbeing far more quickly and effectively.”
Paola Quattroni, Head of Alliance Strategy and Engagement for HDR UK, says:
“We warmly welcome these new members to the UK Health Data Research Alliance. The knowledge and expertise they bring to our community will be invaluable. Having them onboard helps deliver our mission to make significant improvements to people’s lives through ethical use of health data at scale.”
Funded and convened by Health Data Research UK (HDR UK), the Alliance brings together partner organisations committed to improving access to data across cohorts, biobanks, NHS trusts, national agencies and programmatic investments to transform the UK’s health outcomes.
For any queries or information about how to join the UK Health Data Research Alliance, email firstname.lastname@example.org
UK Health Data Research Alliance welcomes patient and public groups to its membership
17 October 2023
This month, the UK Health Data Research Alliance demonstrates its mission to continue expanding and diversifying by welcoming seven new members and for the first time, two patient and public...