Lords hear of need for rare research

Patients with rare diseases must be able to be referred to university hospitals to ensure that clinical research into such problems is not threatened, a House of Lords inquiry has been told.

Scottish medical professors, giving evidence to an inquiry by the select committee on science and technology into medical research and the National Health Service reforms, warned that purchaser-provider contracts had different priorities from those of long-term research, and might not buy expert care from research units.

Christopher Edwards, dean of medicine at Edinburgh University, speaking for the Committee of Scottish Higher Education Principals, said there was a need to refer complex and difficult research problems.

He recommended special funding to allow patients to be referred to hospitals which would not normally come under local health service contracts.

COSHEP, and the Royal Society of Edinburgh, which hosted the inquiry, backed the Culyer report's proposal of a single stream funding route for research, which at present applies only to England and Wales.

They also welcomed Culyer's recommendation of peer review for research, which Professor Edwards said should come under the universities' research assessment exercise rather than being a separate process.

But the witnesses expressed concern over Culyer's definition of research, which seemed to exclude "curiosity-driven" research.

The RSE said there was a need for biomedical and genetic research falling outside the definition of research which had a specific goal.