Data privacy should not hinder cancer research

And more than 80 per cent think there should be a law making cancer registration* compulsory - according to a Cancer Research UK funded survey of almost 3000 people published online today in the British Medical Journal.

The results dispel the belief that people are always more concerned about their right to privacy than public health. And it shows there is strong support for identifiable medical details to be given without consent, provided they are only used in confidence for public health research by recognised research organisations.

Dr Geraldine Barrett, Lecturer in Health Studies at Brunel University and lead author of the study, and Professor Michel Coleman, a cancer epidemiologist at the London School of Hygiene and Tropical Medicine, compiled a questionnaire to find out if members of the public would be concerned about allowing their details - if they had cancer - to be logged by the National Cancer Registry, which was set up to collect data for research.

Of those questioned 81 per cent said holding details of their name and address in the Registry would not be an invasion of their privacy; 88 per cent said they had no objection to their postcode details being held; 87 per cent said being invited to take part in a research study would not be an invasion of privacy. And 72 per cent signed up to all three.

Prof Coleman said: “The NHS Code of Practice on Confidentiality says we can't assume that patients are happy for identifiable information about them to be used for anything except their own medical care. Such assumptions are patronising and unjustified. There has been very little research on what patients or the general public actually think.

“This survey shows categorically that the vast majority of people do want their personal health information to be shared for the collective good, if it could lead to improvements in the diagnosis and treatment of cancer.“

The National Cancer Registry** monitors trends in the incidence of cancer and survival from the disease. Cancer survival comparisons based on National Cancer Registry data are the only way to compare the overall effectiveness of cancer diagnosis and treatment between different regions of the UK, between rich and poor patients, or between the UK and other countries.

Dr Barrett said: "Since the 1998 Data Protection Act there has been confusion and uncertainty for researchers trying to carry out public health research and surveillance. The Act, which implements the European Directive on data protection, is supposed to allow for the confidential use of data for medical research, but the way the Act has been used in the UK has meant that public health research is often blocked.

"The results of this survey show that absolute privacy is not the priority of ordinary members of the public. The vast majority of people are happy for information about them to be used for the wider public good, provided the information is kept confidential and secure. Government policies should recognise this support for public health research."

Professor John Toy, medical director of Cancer Research UK, said: “These results strongly challenge the assumption that the public does not want personal information about cancer health to be registered.

“Just as cancer patients unselfishly want their experiences to help determine the best care for future patients so this study clearly shows the general public shares the same marvellous generosity of spirit.“

Ends