Over the last five years, through the collective strength of its membership, the UK Health Data Research Alliance (the Alliance) has successfully driven and championed system-wide improvements in the availability of UK health data for research and innovation.

Established in February 2019, the Alliance is an independent network of leading healthcare and research organisations committed to accelerating the trustworthy use of health and related data for public benefit. It is a member-led partnership – managed by Health Data Research UK (HDR UK) – that leads the development and adoption of standards, tools, processes, and technologies to maximise the potential of data-driven health research.

The Alliance has gone from strength to strength in the five years since it was formed, harnessing the expertise of its members to address shared challenges in health data research, while providing a unified voice to guide and advocate for innovative change across the landscape.

Five years of impact from the UK Health Data Research Alliance
Five years of partnership and impact from the UK Health Data Research Alliance (image credit: Nada Karrar).

Major achievements to date include:

  • Growth and diversification of its membership: from nine founding members to a network of over 100 organisations today, and expansion beyond data custodians.
  • Accelerated access to health data for vital research during the COVID-19 pandemic: Alliance members developed a unified approach to data discovery and access, aligning processes across the four nations.
  • The publication of a seminal paper on Trusted Research Environments: setting out an approach for a trustworthy ecosystem of data access and analytics environments for health research.
  • Improved transparency in the use of health data for research: the Alliance pioneered a data use register standard to support consistent and accessible public records of data usage.
  • Adoption of international data standards: to support interoperable, reproducible and collaborative health data science within the UK and beyond.

Learn more about the impact of the Alliance during its first five years in this blog post

On reaching the five-year milestone, founding member of the Alliance as former Director of the Clinical Practice Research Datalink (CPRD) and now Executive Director of Innovation and Research Policy at the Association of the British Pharmaceutical Industry (ABPI), Janet Valentine, said:

“I have seen the Alliance grow over the years to encompass more than 100 members today. It plays a unique role in the health data ecosystem by setting standards and expectations of best practice, through thought leadership and importantly convening a forum to enable members to network and develop partnerships. Use of health data is essential for research and innovation by the pharmaceutical industry.

 

The Alliance provides a vehicle for the UK research data community to understand industry’s data needs and to ensure that industry is part of Alliance activities. Both these aspects are important to ensure that UK patients and the NHS benefit from development and access to the latest medicines.”

The Alliance has consistently integrated public and patient perspectives into its work, with members sharing best practices in patient and public involvement and engagement (PPIE), and closely collaborating with HDR UK’s PPIE team and Public Advisory Board (PAB) to amplify key messages and themes affecting the wider data-sharing ecosystem.

Jan Speechley, public member of the Alliance Executive Committee and HDR UK’s Public Advisory Board (PAB), said:

“The Alliance continues to grow and develop to promote health data research for healthy lives. Initiatives to ensure public involvement and engagement demonstrate the shared commitment to bring lived experience into data research. The support for colleagues dedicated to working with the public enables them to promote the Alliance and the importance of data and public understanding. I am excited and proud to be part of this innovative collaboration.”

Five years of the UK Health Data Research Alliance has shown the essential role of partnership and collaboration in fostering a more efficient and scalable approach to health data science. Its members look forward to building on the progress and impact to date, gaining international recognition as a leading network that drives forward and demonstrates best practices in the responsible use of health data for research that benefits as many people as possible.

Andrew Morris, Director of HDR UK, commented: 

“I am immensely proud of the transformative impact the Alliance has had over its first five years. The significant growth, reach and diversity of this membership group demonstrates commitment towards a common goal. The opportunities we have to accelerate improvements in biomedicine, health and care by encouraging widespread and responsible use of health relevant data in a trustworthy and ethical way for the purposes of research and innovation are endless. I look ahead to the next phase of the Alliance with excitement and anticipation as this influential network of partners drive to unlock the full potential of health data for the benefit of all”.

About the Alliance

The UK Health Data Research Alliance is an independent network of leading healthcare and research organisations that leads the development and adoption of standards and best practices  to maximise the potential of UK health data. Its mission is to accelerate improvements in biomedicine, health and care by encouraging widespread and responsible use of health relevant data in a trustworthy and ethical way for research and innovation.

The Alliance is managed by HDR UK and many of its activities are funded as part of HDR UK’s 2023-2028 core work to accelerate the trustworthy use of health data for research. It was previously funded by Innovate UK through the Digital Innovation Hub Programme which formed part of the Data to Early Diagnosis and Precision Medicine Challenge.

Find out more about joining the Alliance