Coordinated health data endeavor in the UK mirrors the European health data arena
The UK government, in partnership with the Wellcome Trust, has unveiled plans to invest up to £600 million to establish a new Health Data Research Service (HDRS). The service, set to be in place by the end of next year, aims to provide a secure single access point to national-scale datasets and facilitate researchers' access to health data.
One of the key features of the HDRS is its commitment to maintaining a "gold standard" of patient confidentiality. The service will implement rigorous security measures such as anonymity and virtual locked rooms to ensure the privacy and security of the data.
The proposed Data (Use and Access) Bill, currently before parliament, outlines the Data Use and Access Barriers (DUAB) provisions. These provisions aim to allow for compatibility of processing for revised or different purposes, as long as research is conducted in the public interest. However, projects must meet safeguards under the proposed new UK GDPR Article 84B, which includes anonymization or pseudonymization of data.
Malcolm Dowden of Pinsent Masons has commented on the DUAB provisions, stating that they strike a balance between enabling greater sharing and pooling of data for research, and protection of individual rights.
The DUAB provisions in the proposed Data (Use and Access) Bill also recognize that patient consent to data processing for scientific research is separate from consent for clinical trials. This is a significant step towards closing the gap between patient consent for data processing and clinical trials.
The UK government plans to reduce the time it takes for pharmaceutical companies to set up clinical trials for new medicines from 250 days to 150 days by March 2026. This move is expected to accelerate the development of new treatments and improve healthcare outcomes.
In addition, the government intends to clarify its position on fees for access to health datasets. Under the EU's EHDS regulation, fees charged for access to data must be proportionate to the cost of collection and preparation. The UK government's approach to fees will be outlined in its full plans, which will be set out alongside the spending review in June.
The Labour government has proposed expanding the concept of 'scientific research' to include commercial activities in its Data (Use and Access) Bill. This move is intended to encourage collaboration between the public and private sectors in the pursuit of medical advancements.
Under the EU's EHDS regulation, data holders, including pharmaceutical companies, must make their data available to others for secondary use under strict conditions. The UK government plans to establish a register of UK health datasets, though specific organizational categories are not detailed explicitly in the available documents. Access fees for such data are typically addressed through regulatory frameworks that determine whether charges apply for accessing health datasets, often emphasizing fair access principles and cost recovery rather than profit.
The new Health Data Research Service is part of the UK government's broader strategy to harness the power of data to improve healthcare outcomes. The service is expected to play a crucial role in accelerating medical research and driving innovation in the UK's healthcare sector.
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