Health Data Research UK releases report on progress to date

Health Data Research UK has published a new report to outline its story so far and progress to date.
The report, ‘Improving Health Data: Impacts from Health Data Research Hubs’, details their journey since launching in October of 2019, when seven centres of excellence in data, tools, scientific knowledge and innovation, formed. 
The ‘hubs’ include:

BREATHE – enabling the use of respiratory health data in research and innovation, to address conditions such as asthma and chronic obstructive pulmonary disease 

DATA-CAN – a UK-wide partnership that aims to unlock the power of health data to improve cancer care

Discover-NOW – works with data from the NHS in London and Manchester, to support research to find new ways to diagnose and treat disease and make care for patients both better and safer

Gut Reaction – harnesses the power of health data to help identify the best treatment for each person with Crohn’s Disease or Ulcerative Colitis

INSIGHT – focused on eye disease and its application to wider health, including diabetes and dementia. It uses anonymised, large-scale data and advanced analytics, including artificial intelligence, to develop new insights in disease detection, diagnosis, treatments and personalised healthcare

NHS DigiTrials – focuses on the development of a foundation service to improve the assessment of clinical trial feasibility, supporting improved planning and delivery of clinical trials in the UK

PIONEER allows innovative healthcare companies to develop, test and deliver advances in acute clinical care.

To date, the hubs have made over 157 datasets available via the Health Data Research Innovation Gateway and worked on over 300 projects with partners.
A notable example of a case study from the hubs is a collaboration between BREATHE and the ZOE COVID-19 Symptom Study. The study is dependent on members of the public logging their symptoms and test results to help gain a better picture of the current rates of COVID-19 in the UK. Currently, there are 54 live projects using the data from ZOE, supplied by BREATHE – a platform to receive, curate, and securely disseminate symptom data.
This data platform is also being used by multiple agencies including the New and Emerging Respiratory Virus Threats, Scientific Pandemic Influenza Group on Modelling, and the Chief Medical Officers COVID-19 Advisory Groups. It provides supported analysis on trends on COVID-19, and current smoking and COVID-19 risk, as well as results from a population symptom app in over 2.4 million people, age-dependent and independent symptoms and co-morbidities predictive of COVID-19 hospitalisation, and mapping the UK COVID-19 epidemic.
BREATHE has also secured a partnership with the Cystic Fibrosis Trust, to provide data linkage for the entire CFT registry across the UK. The registry contains the details of 12,000 people with Cystic Fibrosis. There are also plans for a joint BREATHE-CFT roundtable to showcase the data to industry leaders and share best practices. 
In addition, BREATHE also formed a partnership with the Wales Asthma Observatory. The Observatory is a national e-cohort of patients with a history of asthma, that has been collated from primary and secondary care. A new study launched will analyse the link between socioeconomic deprivation and asthma care, outcomes and deaths in Wales. The dataset currently contains 190,000 patients with asthma in Wales and is continually updated.  
Another programme, NHS DigiTrials, has done vital work in the field of COVID-19 hospital treatments. The hub was behind the RECOVERY (Randomised Evaluation of COVID-19 thERapY) trial which had – by the end of March 2021 – over 4,000 people registered. There are seven trials that have an active data-sharing agreement, 14 trials that they are taking through NHS Digital’s Data Access Request Service (DARS), and 24 trials that are at a pre-application/enquiry stage.  
Ross Stone, Global Programme Director, Healthcare, AstraZeneca, commented: “The Hub’s role is as a facilitator between the NHS, academia and industry partners to provide a level playing field and a safe environment to experiment is critical to the success of innovative and transformational work.” 
View the report, ‘Improving Health Data: Impacts from Health Data Research Hubs’ here.

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