These new members join alongside UK national data custodians, NHS foundation trusts and research institutes to help develop best practice around the ethical use of health data.
Over the last year, the Alliance has grown its membership by 24% by welcoming 18 new members from public agencies, academia, NHS Trusts and charities.
The significant growth of the Alliance, the evolving UK data landscape and the recent changes to funding for the Alliance have prompted a full governance review and consultation that led to key changes, approved by the Alliance Council.
Extension of membership to non-data custodians and complementary organisations will open opportunities for further collaboration and strengthen partnerships with key institutes and organisations that play a crucial role in the health-data ecosystem.
The ten new members are:
- Association of Medical Research Charities which is the membership organisation for charities funding medical and health research in the UK.
- BioIndustry Association (BIA) who brings together the innovative life sciences and biotech industry, enabling and connecting the UK ecosystem so that businesses can start, grow and deliver world-changing innovation.
- Association of the British Pharmaceutical Industry (ABPI) who represent companies who invest in discovering the medicines of the future.
- Dementia Platform UK (DPUK) who is a world class repository and analysis environment for dementia-optimised health research data.
- IBD Registry Ltd who is the national registry for IBD including Crohn’s disease, ulcerative colitis, IBD unclassified and other forms of IBD.
- Optimum Patient Care who provides a range of services to translate research into clinical practice and oversee new sustainable global data sources.
- Lancashire & South Cumbria NHS Foundation Trust who provides a range of health and wellbeing services specialising in secure, perinatal, inpatient and community mental health and learning disability services, including services for children and young people.
- Norfolk and Norwich University Hospitals NHS Foundation Trust who provides a range of health and wellbeing services specialising in cancer care and radiotherapy, orthopaedics, plastic surgery, ophthalmology, rheumatology, children’s medicine and surgery, and specialist care for sick and premature babies.
- Newcastle upon Tyne Hospitals NHS Foundation Trust who provides a range of health and wellbeing services supported by state-of-the-art diagnostic services in both radiology and pathology and a focus on supporting pioneering clinical practice in the NHS.
- Royal Free London NHS Foundation Trust who provides a range of health and wellbeing services for both private and NHS patients.
These ten organisations join 76 existing Alliance members who work together to develop common standards, formats, technologies and tools for the best use of health data and contribute to development of trustworthy health data research infrastructure.
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 improve the UK’s health outcomes.
Nicola Perrin, Chief Executive at AMRC said:
“The responsible and trustworthy use of data is a subject of huge importance to AMRC members and our involvement in this new partnership will reflect this. We look forward to sharing the unique perspective of medical research charities to help increase transparency and public confidence in the use of health data, particularly in areas such as diversity, patient and public involvement and access.”
Steve Bates, BIA’s Chief Executive said:
“Our membership of the Alliance is an important part of our work to ensure Small Medium Enterprises can access and use health research data in an ethical, secure, and efficient manner to accelerate medical breakthroughs. We look forward to contributing to the Alliance’s mission to revolutionise healthcare through the power of data, and to representing SMEs in the process. Together, we can harness the potential of shared health research data to fuel ground-breaking advances in biotechnology.”
Dr Janet Valentine, Executive Director of Innovation and Research Policy at ABPI said:
“The pharmaceutical industry relies on access to anonymised health data to develop new medicines and vaccines, enable patients to have access to them and ensure they are effective and safe once in routine NHS use. Configuring the UK health data ecosystem to facilitate research, whilst safeguarding patient confidentiality, is a goal shared by the whole research community, including ABPI members.”
John Gallacher, Chief Executive at Dementia Platform UK said:
“Dementia Platform UK is committed to enabling scientists from all sectors to access high quality, research-ready data. We believe that working with the Alliance can only benefit this mission and accelerate the development of new treatments.”
Professor David Price, Founder and CEO of OPRI (UK & Singapore) and OPC (Global, UK and Australia) said:
“The Alliance is an important forum for sharing resources and shaping the direction for future data provision and research across the UK. We are fully supportive of the federated TRE approach and look forward to collaborating with partners and making our contribution to improving the wider UK health data research infrastructure.”
Liz Dobson, Chief Executive Officer at the IBD Registry said:
“The IBD Registry’s mission is to drive forwards research in the inflammatory bowel diseases (IBD) by providing an efficient research platform, based around our longitudinal real world data, for all scientists working to improve outcomes for people with IBD. We believe the future lies in the joining together of our organisations as well as the data we hold, and we are very much looking forward to working with our new Alliance partners to help improve health data research for everyone.”
Chris Oliver, Chief Executive, Lancashire & South Cumbria NHS Foundation Trust said:
“By working with the Alliance, we hope to develop and facilitate novel, national-level research and development activity through provision of access to routinely-collected mental health data. Membership will clearly help us in our efforts to build collaborations that enable innovative use of data science to significantly advance our knowledge of and treatment for mental health conditions, ultimately leading to major improvements in services.“
“We are delighted at the steady growth in membership of the Alliance – especially in the last year – and are looking forward to working together with members from sectors unrepresented before, with their unique perspective and experience. Every new member brings with them vital research data insights that helps drive innovation to improve people’s lives.”
The principles underpinning the ethos of the Alliance provide a framework of collaborative and open working practices, drawing from national and international best practice frameworks and recommendations, including the FAIR Guiding principles for scientific data management and the Five Safe framework.
Any requests to access data held by Alliance members on the Innovation Gateway for research and innovation will continue to go through their existing protocols to ensure strict security and data privacy.
For any queries or information about how to join the UK Health Data Research Alliance, email email@example.com
More about our new members
- Association of Medical Research Charities has over 150 member charities that
fund all stages of research – from the most basic to clinical trials – in all areas of health and diseases. https://www.amrc.org.uk/ @AMRC
- BioIndustry Association (BIA) represents over 500 companies. Members include start-up, emerging and more established bioscience companies, pharmaceutical companies, academic, research and philanthropic organisations, and service providers to the life science sector. https://www.bioindustry.org/ @BIA_UK
- Association of the British Pharmaceutical Industry (ABPI)’s members supply cutting-edge treatments that improve and save the lives by working in partnership with Government and the NHS. https://www.abpi.org.uk/ @ABPI_UK
- Dementia Platform UK (DPUK) offers researchers worldwide free access to high quality, multi-modal data. Their remote trusted research environment comes complete with all the analytical software packages required to undertake multimodal analysis. https://portal.dementiasplatform.uk/ @DementiasUK
- IBD Registry Ltd collects and analyses health data from people with inflammatory bowel disease (IBD) across the UK to help improve treatment and care and support research. It is co-owned by the British Society of Gastroenterology, the Royal College of Physicians and Crohn’s & Colitis UK. https://ibdregistry.org.uk/ @IBDREGISTRY
- Optimum Patient Care works in collaboration with health care professionals and organisations across the world. OPCG consists of a team of data scientists, medical scientists, database experts and business systems experts to facilitate improvement in the diagnosis, treatment and management of chronic diseases within primary care. www.optimumpatientcare.org optimumpatientcare.org @OPCare
- Lancashire & South Cumbria NHS Foundation Trust’s additional services provided include, community nursing, health visiting and a range of therapy services. Wellbeing services provided include smoking cessation and healthy lifestyle services. https://www.lscft.nhs.uk/ @WeAreLSCFT
- Norfolk and Norwich University Hospitals NHS Foundation Trust carries out nearly one million outpatient appointments, day case procedures and inpatient admissions annually. https://www.nnuh.nhs.uk/about-us/ @NNUH
- Newcastle upon Tyne Hospitals NHS Foundation Trust has historically provided high innovation in medical research regionally, nationally and internationally. https://www.newcastle-hospitals.nhs.uk/ @NewcastleHosps
- Royal Free London NHS Foundation Trust provides a range of health and wellbeing services for both private and NHS patients. https://www.royalfree.nhs.uk/ @RoyalFreeNHS
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