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The new NHS national programme for information technology (IT) must have research built in as a core task, says a report published this week. And it must use unique identifiers for each patient to enable data from different sources to be linked at the level of individual patients if it is to achieve its huge potential for clinical research.
Researchers produced the recommendations after using simulations of clinical studies to test the system.
The programme—the world's largest IT system—is designed to link different computer systems across the NHS, including an NHS care records service that will allow staff from different organisations to access the records of patients anywhere in England.
It has been notorious for its delays and overspends (BMJ 2007;334;815, 21 Apr, doi: 10.1136/bmj.39189.376979.DB); but the establishment of connections between different NHS databases, such as those holding primary care records and cancer registry records, could enable researchers to explore a wide range of trends and associations.
To clarify the potential for the use of patients' data from the new IT system, the UK Clinical Research Collaboration, which is the research and development advisory group to Connecting for Health, the agency developing the network, commissioned four simulated research exercises. These exercises were designed to model interventional clinical trials, surveillance, prospective tracking of an identified cohort, and observational epidemiological research.
On the basis of their experience in the simulated exercises, the advisory group recommended that the IT system should make it mandatory to use unique patient identifiers. They proposed that use of the NHS number or its equivalent should be mandatory in all key NHS records and activities, including laboratory records. Currently the use of patient identifiers is recommended but not mandatory.
Ian Diamond, chief executive of the UK Economic and Social Research Council and chairman of the advisory group, explained: “To build a complete picture of each patient's health and care, data linkage at an individual patient level will be needed. Pulling information together from different sources for a patient will require a unique identifier for each patient.”
The advisory group's report also recommended that Connecting for Health “should formally recognise that research is a core, not secondary, component of the development of the NHS Care Records Service, as it benefits patients directly.”
Carol Dezateux, a member of the advisory group and professor of paediatric epidemiology at the Medical Research Council's Centre for the Epidemiology of Child Health, University College London, led a simulation looking at the outcomes and safety of assisted reproduction technologies.
She said, “Research is integral to patient benefit. The IT system has huge research potential, and the UK already has a distinguished reputation in using health records in research. To build on this, research must be seen as part of improving patient care, just as much as improving services.”
The advisory group noted that although clinical research is a core component of an effective health delivery system, the development of the NHS care records system currently does not specify research as a goal. They warned, “This undermines the potential for developing the system to capture the benefits of research.”
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.
Report of Research Simulations is available at www.ukcrc.org.