Health research and surveillance is vital for the delivery of effective health services and public health interventions. But since the introduction of the Data Protection Act, research has been disrupted because of concern about the ethics and legality of using identifiable data from patient records.
The NHS code of practice on confidentiality states that it cannot be assumed that patients are happy for information about them to be used for purposes other than direct care, but there is currently little evidence on public opinion.
So researchers set out to assess the views of the British public on the acceptability of personal information being used by the National Cancer Registry for public health purposes.
A total of 2,872 people answered a series of questions on cancer registration and personal privacy in face-to-face interviews. Of these, 81% said that holding details of their name and address in the registry would not be an invasion of their privacy, 88% said that they had no objection to their postcode being held, and 87% said that being invited to take part in a research study on the basis of their inclusion in the registry would not be an invasion of privacy. Only 2% considered all of these to be an invasion of privacy, and 72% were happy with all three.
81% of respondents also said that they would support a law making cancer registration statutory.
Most likely to be concerned about invasion of privacy were those whose ethnicity was not "white British," those of lower socioeconomic status, and those living in rented accommodation.
These results show that the British public supports the use of identifiable cancer data without consent for public health research, provided the information is kept confidential and secure, say the authors.
Research across the European Union has also shown that doctors and medical services are highly trusted with regard to their use of individuals' personal information, much more so than tax authorities, banks, employers, and insurance and credit card companies.
"Our findings provide a direct insight into public views and suggest strong support for the confidential use of identifiable data on cancer for public health purposes and for statutory cancer registration," they conclude.