These new members join alongside UK national data custodians,听NHS foundation trusts and research institutes to help develop best practice around the ethical use of health data.听

Over the last year, the has grown its membership by 24% by welcoming 18 new members from public agencies, academia, NHS Trusts and charities.鈥鈥听

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.听听

听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. 听

The ten new members are:听听

  • which is the membership organisation for charities funding medical and health research in the UK.听
  • 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.听
  • who represent companies who invest in discovering the medicines of the future.听
  • who is a world class repository and analysis environment for dementia-optimised health research data.听听
  • who is the national registry for IBD including Crohn鈥檚 disease, ulcerative colitis, IBD unclassified and other forms of IBD.听
  • who provides a range of services to translate research into clinical practice and oversee new sustainable global data sources.听
  • 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.听
  • who provides a range of health and wellbeing services specialising in cancer care and radiotherapy, orthopaedics, plastic surgery, ophthalmology, rheumatology, children鈥檚 medicine and surgery, and specialist care for sick and premature babies.听
  • 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.听
  • who provides a range of health and wellbeing services for both private and NHS patients.听

These ten organisations join 76 existing Alliance members who work together to听听develop common standards, formats, technologies and tools for the best use of health data and contribute to development of trustworthy health data research infrastructure.听

Funded and convened by Health Data Research UK (51爆料网), 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鈥檚 health outcomes.听

Nicola Perrin, Chief Executive at AMRC said:听听

鈥淭he 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.鈥听

Steve Bates, BIA鈥檚 Chief Executive said:听

鈥淥ur 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鈥檚 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.鈥

Dr Janet Valentine, Executive Director of Innovation and Research Policy at ABPI said:听听

鈥淭he 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.鈥听

John Gallacher, Chief Executive at Dementia Platform UK said:听

鈥淒ementia 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.鈥听

Professor David Price, Founder and CEO of OPRI (UK & Singapore) and OPC (Global, UK and Australia) said:听

鈥淭he Alliance is an important forum for sharing resources and shaping the direction for future data provision and research across the UK.鈥 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.鈥听

Liz Dobson, Chief Executive Officer at the IBD Registry said:

鈥淭he 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.鈥

Chris Oliver, Chief Executive, Lancashire & South Cumbria NHS Foundation Trust said:听听

鈥淏y 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.鈥疢embership 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.鈥听

Paola Quattroni, Head of Alliance Strategy and Engagement for 51爆料网, says:鈥听

鈥淲e are delighted at the steady growth in membership of the Alliance 鈥 especially in the last year 鈥 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鈥檚 lives.鈥鈥听

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 for scientific data management and the .听

Any requests to access data held by Alliance members on the Innovation for research and innovation will continue to go through their existing protocols to ensure strict security and data privacy.鈥鈥听

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

More about our new members听

  • has over 150 member charities that
    fund all stages of research 鈥 from the most basic to clinical trials 鈥 in all areas of health and diseases.听 https://www.amrc.org.uk/ 听@AMRC听
  • 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. 听https://www.bioindustry.org/ 听@BIA_UK
  • members supply cutting-edge treatments that improve and save the lives by working in partnership with Government and the NHS. 听https://www.abpi.org.uk/ 听
  • 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. 听@DementiasUK
  • 听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鈥檚 & Colitis UK. 听 @IBDREGISTRY
  • works in collaboration with health care professionals and organisations across the world.鈥 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.鈥 www.optimumpatientcare.org 听 @OPCare
  • additional services provided include, community nursing, health visiting and a range of therapy services. Wellbeing services provided include smoking cessation and healthy lifestyle services. 听 @WeAreLSCFT
  • carries out nearly one million outpatient appointments, day case procedures and inpatient admissions annually.听 听@NNUH
  • has historically provided high innovation in medical research regionally, nationally and internationally. 听@NewcastleHosps
  • provides a range of health and wellbeing services for both private and NHS patients. @RoyalFreeNHS听

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