The inclusion of two very influential patient and public involvement and engagement bodies will prove invaluable in demonstrating trustworthiness in the use of health-related data. Particularly, in the current climate where so much uncertainty, fear and misinformation surround data privacy and use.

Understanding Patient Data and use MY data have joined the Alliance alongside five other exciting data custodians. These include one of the largest acute teaching trusts in England, a globally recognised children’s hospital and a national training and education body. The addition of these new members will serve to strengthen our ambition to build skills and capability in health data science, which ultimately benefits everyone in the UK receiving healthcare. For example, the Breast Cancer Now Generations Study, which is a partnership between Breast Cancer Now and The Institute of Cancer Research, London, brings invaluable expertise and influence to the field of cancer research. Furthermore, we are expanding our connection with academia through our partnership with one of England’s leading research universities.  

 The seven new members are:  

  • Alder Hey Children’s Hospital NHS Foundation Trust is one of Europe’s biggest and busiest children’s hospitals, providing specialist health care services for over 330,000 children, young people and their families every year.  
  • NHS Education for Scotland is a national health board within NHS Scotland, responsible for providing education, training, workforce development, workforce data and technology for health and social care. 
  • The Breast Cancer Now Generations Study  is a large, scientific cohort study led by The Institute of Cancer Research (ICR) specifically focused on finding the causes of breast cancer. 
  • Understanding Patient Data is a research, policy and advocacy organisation that works with patient groups, charities, the NHS and policymakers to bring transparency, accountability and public involvement to the way patient data is used.  
  • University Hospitals Southampton NHS Foundation Trust is a large acute teaching Trust serving a population of 3.7m people across Wessex. The Trust provides highly specialised services in neuroscience, oncology and cardiology alongside critical care, outpatients, diagnostics, and research. 
  • University of Sheffield is a public research university with a global reputation for excellence and research-led learning and teaching.  
  • use MY data is currently the only UK independent movement of patients, relatives and carers harnessing the patient voice to build confidence in the use of patient data to save lives and improve outcomes. 

These seven organisations bring the total Alliance membership to 93, showcasing the depth, diversity and influence that the Alliance brings to the health data ecosystem. This growth aligns with the Alliance’s mission to build community, capacity and connectivity across the four nations.  

Nicola Hamilton, Head of Understanding Patient Data, said:

“Understanding Patient Data (UPD) is delighted to join the UK Health Data Research Alliance. We are looking forward to working collaboratively with leading healthcare organisations, researchers and charities to address joint challenges and establish best practices to drive progress in the use of data for research. UPD particularly welcomes the opportunity to strengthen the perspective of patients and the public in UK HDRA conversations about data use.” 

Richard Stephens (Chair) and Dave Chuter (Vice-Chair) of use MY data, say:

“use MY data is a grassroots movement of patients, carers and relatives. We are the only independent patient movement in the UK focused on promoting the responsible, accountable use of patient data to save lives, improve healthcare and advance health research.  As an Alliance member we will use our collective voice to advocate every patient’s data being used to create and support an NHS that serves us all, and we will work to remove all barriers preventing this. We will always champion robust and transparent safeguarding and clear, honest and open communication with patients and the public.” 

Paola Quattroni, Head of Alliance Strategy and Engagement for the UK Health Data Research Alliance, says:   

“The continued growth and diversification across our members enriches the Alliance greatly. Our partnership with new organisations, including NHS trusts, a longitudinal study, an education body and two major public group representatives will extend our reach and influence to develop a more joined-up approach to data standards and public and patient engagement. We look forward to working with our new and existing members to improve how we make health data available in an efficient, secure and trustworthy way for research and innovation that can change people’s lives.” 

For any queries or information about how to join the UK Health Data Research Alliance, email ukalliance@hdruk.ac.uk