Within three months, these centres of excellence:
- Identified 39 datasets and made them discoverable through the Health Data Research Innovation Gateway
- Set up in physical locations around the UK
- And set out plans to engage with and involve patients and the public on use of patient data
Several of the Hubs also set up partnerships with national and global industry.
BREATHE – has identified datasets which will accelerate studies in asthma, COPD, interstitial lung disease and lung infections. They are co-located at the BioQuarter in Edinburgh with the Asthma UK Centre for Applied Research and the NIHR Global Health Research Unit on Respiratory Health, providing opportunities for collaboration. They have drawn on their partner organisation’s Patient and Public Involvement and Engagement (PPIE) groups to ensure lay people have a voice in key decisions and are appointing two lay people to their Leadership team.
DATA-CAN – opened two offices: one in London, close to a cluster of leading academic, data and clinical centres, and one at the Leeds Institute for Data Analytics. Datasets from Macmillan, Great Ormond Street Hospital, Genomics England, and the Yorkshire Specialist Register of Cancer in Children and Young People, will support data-driven science and enable more personalised medicines and treatments. Three patient reps affected by cancer are involved in developing their PPIE principles and processes and they will now be part of a larger PPIE Group affected by cancer, with two members of the public.
Discover-NOW – Discover-NOW is located at Imperial College Health Partner’s offices at the Royal College for GPs and has over 30 research projects through the longitudinal, linked dataset underway related to community, primary care, prescribing and mental health. The hub brings together NHS organisations, globally recognised academic, commercial and charity partners including biopharma company, Astra Zeneca. They have been driving deliberative engagement in London, supported by IpsosMORI and The King’s Fund with a Citizens’ Summit to discuss and deliberate Londoners’ expectations in relation to the use of their health and care data.
INSIGHT – located within the Institute for Translational Medicine (ITM) in Birmingham, they have identified ophthalmic datasets from University Hospital Birmingham and Moorfields Eye Hospital to form the largest ophthalmic imaging dataset in the world. They have established a partnership with pharmaceutical company, Roche, and are involving PPIE reps in the co-production of new projects.
NHS DigiTrial – uploaded seven NHS Digital core datasets onto the Gateway, enabling researchers to better understand the clinical trial data that NHS Digital holds and signpost them to the data access processes. The Hub is located at NHS Digital’s Southport office and they have established a partnership with pharmaceutical company, Novartis. They work alongside 10 members of the public to provide advice and insights around PPIE activities, particularly around building public trust and building support for clinical trials.
PIONEER – also based at the ITM, they are developing a novel acute medicine database, with an initial dataset of the acute care of 2018 patients who contributed to the 100k genome project. The theme of the Acute Care Hub was developed in workshops with members of the public and they are nominating a PPIE co-applicant to chair a Public Advisory Group.
Gut Reaction – located across the Cambridge Biomedical Campus and the Eastern AHSN site, they have uploaded seven datasets relating to the Inflammatory Bowel Disease Registry to the Gateway. They have established a partnership with Microsoft and delivered a ‘proof of concept’ secure cloud research environment in MS Azure. They recently created a Patient Advisory Panel to ensure patient voices are involved in key decision making.
Health Data Research Hubs are centres of excellence with expertise, tools, knowledge and ways of working to maximise the insights and innovations developed from the health data
Health Data Research Hubs reach their first milestone
31 January 2020
The seven new Health Data Research Hubs, which went live on 1 October 2019, have reached their first key milestone within 3 months. This funding milestone required the Hubs to deliver information...