Health bodies defend their right to access patient data
Phyllida Brown Exeter
Clashes between the Department of Health and privacy campaigners looked set to continue over new regulations to allow healthcare providers in England and Wales to pass patients' data--without consent--to monitoring bodies such as the cancer registries.
The basic provision for the measure, however, was approved last year as part of the Health and Social Care act. The present row relates to the statutory instrument being formulated for use under the act.
Despite claims by privacy campaigners that the law would be a "snoop's charter," health agencies insisted that the regulations gave them only limited scope to use data, which they say are already carefully protected from misuse.
"This does not give us carte blanche," said Dr Barry Evans, public health consultant at the Communicable Disease Surveillance Centre, London, who is responsible for the privacy of the centre's data. "It just legitimises what is currently going on."
Dr Evans stressed that the NHS culture needed to change and that patients needed to know more than in the past about how their data are used. The centre was already developing and testing new leaflets and posters to explain to patients what happened when, for example, their samples were tested. But he said that 85% of the data coming into the centre was unnamed anyway, and names on the remainder are removed after a period.
But Fleur Fisher, a privacy campaigner for the charity Prevention of Professional Abuse Network, said the regulations were too wide and open to abuse. She accepted the need for disease monitoring but argued that a narrower measure should have been drafted if people's already shaken confidence in medical research were to survive. "This completely undermines the doctor-patient relationship," she claimed.
Patients' information has for years been passed to cancer registries, the Public Health Laboratory Service, and others with only implied consent. The practice has provided valuable public health information but has become unacceptable in the government's new "patient centred" approach to the NHS, and politically explosive in the wake of Alder Hey and other disasters.
The government says the new law is a temporary measure. It is meant to allow the cancer registries and the Public Health Laboratory Service to continue their monitoring and surveillance work while the NHS develops new methods either for seeking patients' explicit consent for the practice or making data anonymous, where consent cannot be gained. It is not yet clear how or when these new approaches would be implemented.
"The current situation is not right," health minister Hazel Blears told the Commons health committee last week. "For many years the NHS has been run on paternalistic lines, with managers and clinicians making decisions about what is best for patients." But, she said, "We cannot move from one system to another overnight. We cannot stop medical research, abandon all the valuable work that is being done on cancer, and forget our responsibilities to monitor and sustain public health while we take time out to build systems that meet the standards of confidentiality that apply."
Other countries take widely differing approaches. In the United States, Canada, and some European countries cancer is a notifiable condition, so doctors are required by law to inform the registries. Some countries can add more easily to the list of infectious diseases classified as notifiable than Britain. In Denmark, people are informed about the law to register cancer cases and consent is not explicitly sought, although patients can object. "I had one objection in 15 years," said Dr Hans Storm of the Danish Cancer Society, who maintained the Danish register until very recently.
The draft regulations are on the Department of Health's website at www.doh.gov.uk/ipu/confiden/act/draftstatutoryinstruments.pdf (accessed 28 May 2002).
studentBMJ 2002;10:215-258 July ISSN 0966-6494
