 Researchers are being blocked from accessing patient records |
Lives are being lost because medical research is being hampered by over cautious regulation, doctors say. Researchers have being using personal medical data for decades to carry out studies, but the Academy of Medical Sciences said the practice was at risk.
Leading doctors said regulatory bodies were using laws like the Data Protection Act to block research.
They said the study which established the smoking and lung cancer link would not have gone ahead in today's climate.
Sir Richard Doll started investigating the high number of cases of lung cancer using personal medical data in 1947 and eventually made the link with smoking. The finding has been hailed as one of the most important breakthroughs in medical research history.
 | MIXED STORY FOR RESEARCHERS Blocked - A King's College Hospital team were prevented last year from carrying out a follow-up study into a potential link between cancer and Gulf War service. Data Protection Act cited by regulators Delayed - Cancer Research Fund study into a screening trial for prostate cancer was delayed 16 months by regulators. Finally, given go-ahead at end of 2004 Given go-ahead - Joint British Heart Foundation / Medical Research Council research into cholesterol-lowering drugs three drugs ago found they should be prescribed to many more people. It is estimated the new guidance saves 5,000 lives a year, but the study was only possible after regulators gave it the green light |
But Professor Robert Souhami, who chaired the working group which produced the Academy of Medical Sciences report, said times have changed.
"The problem is not so much with the law but the way it is interpreted.
"Since the 1990s regulators have been taking a stricter line and this is making it hard for researchers to get permission to carry out studies using personal data.
"The UK used to be a world leader on this, but it is not any longer."
Research carried out using personal data cannot often be done on an anonymous basis because doctors need to be able to identify the patients when they do follow up studies.
But Professor Souhami said the EU clinical trials directive, human rights legislation and the common law on confidentiality had all been used to block research.
However, he added the main culprit was the Data Protection Act, but was unable to give figures for the proportion of research that is stopped.
Gulf War
Research in this area is regulated by a number of bodies, including the Information Commissioner's Office, General Medical Council, the Patient Information Advisory Group and individual NHS trusts.
Professor Simon Wesley, of the Institute of Psychiatry, King's College London, a member of the Institute of Psychiatry, said he had had research on the incidence of cancer among Gulf War veterans blocked because of the Data Protection Act.
"We did a study in 2000 but it was really too early to tell if there was a link. When we came back last year, we were told we would have to contact each person individually to get permission under the act."
Rory Collins, professor of medicine and epidemiology at Oxford University and a member of the AMS working group, also attacked the act, which he pointed out had contributed to information on Soham murderer Ian Huntley not being passed between police forces.
"That led to two tragic deaths.
"In medical research there are thousands if not tens of thousands of deaths occurring in the UK alone through the misinterpretation of these laws and guidelines."
Among the academy's recommendations, the report said that the new electronic patient records system should include in its guarantee that the data could be used to support research.
It also called for research into public awareness and attitudes towards medical research using personal data.