UKCRC releases report on the use of NHS Care Records for high quality research

Four teams of researchers have been working on behalf of the UK research community to conduct a series of simulations to examine how the NHS Care Records Service could support clinical research.

The simulations were commissioned by the UKCRC R&D Advisory Group to Connecting for Health and were sponsored by the Department of Health Director-General of R&D and Director of IT Services. The simulations offered a unique opportunity for the research community to engage with NHS Connecting for Health. This was reflected in unprecedented access to members of the NHS Connecting for Health team throughout the period of the simulations.

The simulation teams highlighted the technical, regulatory and governance issues of using the NHS Care Records Service and made six main recommendations:

• Mandated use of a common patient identifier to enable linkage of sources of data at a patient level
• Communication of the relevance of research to healthcare with the recognition that research is a core, not secondary, component of the development of the NHS Care
• Records Service as it benefits patients directly
• Federation of existing databases to ensure that the data made available are as comprehensive as possible
• Improvements in data quality to ensure that data are accurate and based on a set of standards for recording and processing
• Initiation of governance discussions to ensure appropriate access to, and use of, data for research purposes
• Engagement with key stakeholders to communicate the joint benefits of using patient data for research and clinical care

The report also recommends the development of a UK-wide approach in coordinating efforts to support better exploitation of existing resources across the UK.

In response to the work of the simulation teams Lord Hunt, Minister of State for Quality at the Department of Health, has supported the recommendations in the report and has asked his Department’s Director-General of Research and Development to work with the Director of IT Services on an action plan to take the recommendations forward. This will be carried out in the context of other developments in e-health, and in tandem with measures to strengthen the good governance of health information used for wider purposes.