Health Research, Data Protection, and the Public Interest in Notification

NHS health care records represent an extremely valuable national resource. It is also a resource that many researchers feel is currently under-utilised. As one of the largest single healthcare systems in the world, the NHS offers the UK a unique strategic advantage as a resource for medical research and innovation. Despite recent progress by the National Institute for Health Research (NIHR), the research potential of the NHS remains unfulfilled. The establishment of the Rawlins’ Review reflected widespread dissatisfaction within the research community with the restrictions on research imposed by the existing regulatory framework,4 and the way in which that framework is currently interpreted by relevant regulatory agencies.5 While concern is largely motivated by a belief that improved research access might yield considerable public gains, there may also be personal benefits to be realized through increasing the opportunities for individuals to become involved in health care research, and unnecessarily hindering research might therefore frustrate both personal and public advantage.6