Devil's Advocate: Sick Note

The government is talking up its integrated electronic patient record system for the NHS but a new survey shows patients are worried about confidentiality – and rightly so, says Martin Brampton

The public has not given up on hopes that personal information might be kept private. The Consumers' Association talked to people about the integrated record system the NHS is installing. It is clear that most of them worried about confidentiality.

This is despite the pervasive tendency for government to integrate information held on individuals. Only recently this column discussed the trend, and in the Silicon.com's Agenda Setters 2003 poll of people with the most influence on technology, David Blunkett scored highly. That related significantly to his cavalier attitude to reservations about identity cards and such like.

Health records raise difficult and complex issues. The professionals tend to like the idea of building a complete record of every health related transaction, with nothing ever lost throughout a patient's life. Many patients might take a different view. There can be good reasons why an individual might well wish to put a health related incident into the forgotten past.

Pressures certainly exist to reveal more about patients. Employers would sometimes like to know the medical judgment on individuals claiming sick leave. Insurance companies would love to have more information on factors that affect mortality. And government always has a whole bunch of reasons for wanting to know as much as possible about each citizen.

Another issue highlighted by the Consumers' Association survey was the general desire to restrict information to clinical staff, and even then only on the basis of a need to know. Quite apart from the difficulty in fully implementing this, there are questions about ancillary people, such as epidemiologists, whose work is important but not clinical. Likewise, studies into the effects of new drugs involve technical but non-clinical staff.

Many individuals wanted access to their own records and most of these wanted some ability to correct errors. This is hardly unreasonable, given the appalling experiences some have suffered at the hands of the credit rating agencies. Obtaining information on one's own record has been difficult enough, but correcting errors has often been nigh on impossible.

Perhaps as a result of the glossy image that IT projects, survey respondents were surprisingly confident in technology. While asking for security restrictions and limited access, many liked the idea of fingerprint recognition as the mechanism for enforcement. Presumably they are not aware of demonstrations of how easily the gadgetry can be fooled.

Now it would be a mistake to suggest that there are no advantages to improving NHS patient records. Certainly, health professionals can work more efficiently and treat patients more safely if they have comprehensive information. Better data is needed on health trends in the population, and the links between environmental factors and ill-health.

The trouble is, there is very little informed discussion on the issues. Technologists exaggerate the capabilities of their products and gloss over the fact that electronic records inevitably make information more vulnerable to misuse. Just about every existing electronic record on private individuals – police files and financial status for example – can be obtained improperly at a price.

There is a natural tension between authority of any kind, with its vested interest in maximising knowledge in its sphere, and the individual's desire for a reasonable degree of privacy. It is clear that most people perceive changes in NHS record keeping as another example of these issues. Much less clear is that knowledge about the pitfalls of electronic records is widespread enough to challenge complacent official views.

** Martin Brampton is a director and founder of Black Sheep Research (www.black-sheep-research.co.uk), an independent consultancy providing research, writing and speaking services on a wide range of business and technology subjects. Martin was previously a director at Bloor Research, and has worked with IT as a user and analyst for over 20 years. He can be contacted at silicon@black-sheep-research.co.uk.

For past Devil's Advocate columns see the links below, or type 'Devil' into our search engine.