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Patients on-line for instant health opinion

Glenda Cooper
Friday 10 May 1996 23:02 BST
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Health authorities should set up "virtual reality health councils" so that patients can access information from public computers in the high street.

Ordinary people must be "given power over themselves, their illnesses and their lives", said John Spiers, chairman of the Patients' Association, addressing a conference of cancer specialists in Birmingham.

Mr Spiers said regional health authorities should provide data on treatments' success rate and patient experiences which could be posted on the Internet. This then could be accessed by rich or poor alike from computers in public places paid for by the authority.

"Information on public health should be available in every high street. It will change the emphasis," he said. "There will be a fundamental change in the distribution of intelligence."

By allowing patients to get on-line they could learn where the most efficient and successful hospitals were, and demand the most effective treatment.

But Robert Gann, director of the charity Help For Health Trust, warned that more information was not always a good thing.

He told conference - "Cancer Services: From Calman To the Millennium" - that the emphasis should be on good quality data. "Poor quality information attractively packaged on the Internet is the worst of all possible worlds," he said. "There should be less concentration on the medium and more on the message."

But doctors should realise that the patient knows best when it comes to judging the impact of disease, added a consultant clinical psychologist.

They often failed to grasp what concerns their patients, but if they took their views into consideration they could find which treatments most effectively help quality of life, said Dr Anne Cull from the Imperial Cancer Research Fund's medical oncology unit at the Western General Hospital, Edinburgh.

When patients were asked how much their experience tallied with the doctor's perception of it on a scale of 0.1 to 1 (where 0.1 was completely unrelated and 1 was perfect agreement), the result came out at 0.31.

"Doctors and nurses are often poor judges of patients' experience," she said. "Symptoms and side-effects do affect patients' quality of life. Patients often welcome quality of life assessment within their treatment as a vital opportunity to explain their feelings and personal experiences."

When cancer patients in Canada were asked to fill in a questionnaire they were so keen to have their feelings made known that 95 per cent replied, answering 99 per cent of it.

Dr Cull told delegates that such data could be used to give patients more information about the implications of treatments, enabling them to make more informed choices. But she added that further research into areas such as sexuality, fatigue and brain function still needed to be carried out to ensure the clinical value of quality of life measurement.

"Quality of life assessment in clinical practice may require a modest investment of staffed time, but it provides a cost-effective means of highlighting the patients' concerns which will lead to improvements in doctor-patient communications."

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