Records prematurely destroyedBMJ 1995; 310 doi: https://doi.org/10.1136/bmj.310.6974.258 (Published 28 January 1995) Cite this as: BMJ 1995;310:258
- M M Hawkins,
- A W Craft
- Epidemiologist Childhood Cancer Research Group, University of Oxford, Oxford OX2 6HJ
- Chairman of United Kingdom Children's Cancer Study Group Department of Child Health, University of Newcastle, Newcastle upon Tyne NE1 7RU
EDITOR,—Nicholas Wald and colleagues recently outlined the threats to research based on personal medical records, posed by the recently proposed guidelines from the Department of Health, the BMA, and the European Commission about safeguarding confidentiality.1 We, in common with many colleagues, share their concerns. A requirement to obtain explicit consent from each patient before records could be accessed, as proposed by the European Commission, would prevent most epidemiological and clinical studies that need to use personal records, with the exception of very small case series. The need to seek the permission of local ethics committees to undertake such research may seem a less serious obstacle, but this process is likely to effectively block some potentially important studies.
A recently published study about the risks and causes of secondary leukaemia after childhood cancer in Britain provides an example.2 The results of this study are of use both in planning future treatment protocols—to avoid or minimise such risks in the future—and in providing unbiased and reliable information for the purpose of rationally monitoring and counselling survivors. As the study was a national, population based cohort study involving the records of almost 16500 patients the complexity and expense of obtaining clearance from individual local ethics committees would have produced an additional financial and administrative burden that could be prohibitive during a time of extremely limited research funds. The study proceeded with the agreement of the BMA's medical ethics committee for the release of cancer registration details, as part of the standard procedures of the Office of Population Censuses and Surveys.
Unfortunately, gaining permission to access personal medical records in not the only threat to research that depends on such records. As we recently outlined in the BMJ there is evidence that medical records are being prematurely destroyed, and at least in part this seems to be attributable to the pressures for space in the NHS; we also indicated the profound consequences of this premature destruction both clinically for patients and for research,3 it would certainly be imprudent, and arguably irresponsible, if the need for approval by local ethics committees or inadequate storage space prevented the legitimate long term follow up of survivors of childhood cancer or any other potentially “at risk” group in Britain.