The use of patient data for research

The NHS treats the largest single pool of patients in the world and is a valuable resource for many of our clinical and non-clinical researchers. NHS patient records, cancer registers and databanks can be used to research the causes of cancer, monitor survival rates, and to study the effectiveness of treatments and interventions such as cancer screening. This data can also be used to determine how people use the health services, which is vital in identifying where inequalities exist. One of the most significant findings made using patient data was in 1950 when Professor Sir Richard Doll and Professor Sir Austin Bradford Hill identified the statistical link between smoking and lung cancer.

The development of the National Programme for IT (NPfIT) should enable greater use of patient data for research. In recent years the advent of this programme has spawned increasing interest and awareness of the issues involved. In addition, more recent developments such as the Research Capability Programme (RCP) and the National Cancer Intelligence Network (NCIN) are also working towards a framework that recognises the public benefit of research and provides support for research.

However it is often difficult for researchers to get access to records, or navigate the red tape required to undertake this type of research. As a result, we are concerned that we may not be getting the most from our funding in this area. We want a regulatory framework in the UK that wholly supports and facilitates the secondary use of patient data for research.

More information on the issues involved in undertaking research on patient data can be found in the reports published by the Academy of Medical Sciences Personal data for public good: using health information in medical research published in January 2006 and the House of Commons Health Select Committee The Electronic Patient Record published in September 2007.