The U.K. Government has announced the creation of a new U.K-wide Health Data Research Service that will provide a secure single access point to national-scale data sets. The Wellcome Trust and the Government will invest up to GBP600 million in the new service.
The National Health Service holds an almost uniquely powerful, longitudinal set of patient data which may hold the key to understanding diseases such as dementia and cancers. Although detail on the specific arrangement is light, access to this data may help researchers find new treatments more quickly.
John-Arne Røttingen, Chief Executive of Wellcome, said:
“Providing a single, secure service for approved researchers will take away the significant overhead associated of locating, accessing and comparing disparate datasets. It will create opportunities for patients to access new treatments through trials that would otherwise have been hard to arrange or conduct.”
Whilst highlighting the potential advantages of a more streamlined approach to data access, the announcement acknowledged the need to ensure patient confidentiality through, for example, robust security measures, anonymisation and “virtual locked rooms”.
The National Data Guardian, Dr Nicola Byrne, supported the initiative, saying:
“To maintain the public’s trust, it’s crucial that data security, clear public benefits, and full transparency around data access and use remain at the forefront. I look forward to working with others to ensure the new Health Data Research Service meets these expectations, unlocking the power of data to benefit patients and the public alike.”
The new service will be based at the Wellcome Genome campus in Cambridge.
The Prime Minster also announced that clinical trials will be fast-tracked with the current time it takes to get a clinical trial set up cut to 150 days by March 2026, in contrast to over 250 days, the figure when the data was collected in 2022. This will be achieved by “cutting bureaucracy” and standardising contracts, with the aim that time is not wasted on negotiating separate details across different NHS organisations. Trust level data will be published for the first time in a push for greater transparency of the process for approval of clinical trials in the U.K.
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