The market in healthcare data

Healthcare generates a vast rainforest of data that could be used more widely for research if barriers to access could be overcome. One barrier is cost. Government and commercial traders in the precious hardwoods of healthcare data charge five or six figure sums per year for data access.1 2 Other barriers include the slow, tortuous application processes that are driven by rigid rules, often arbitrarily applied. These barriers obstruct access to more affordable data from the Health and Social Care Information Centre (HSCIC), the Office for National Statistics, the Healthcare Quality Improvement Partnership, and Public Health England.

A fundamental problem with all these data suppliers is the lack of incentives to provide data for research. Although the research might save lives through improving services or developing new tests or treatments, denying access carries no penalties. HSCIC has a growing backlog of more than 200 applications,3 but queues for data from the other suppliers are rarely recorded. We see little attempt to quantify the research not done, the …