Patients draw healing power from the online lifeline

Julia Hinde reports on a project which will make detailed medical research available to patients using the Web.

Five-day-old Baebhen Schuttke received an urgently-needed liver transplant after her parents researched her condition on the Internet. Her case symbolises a revolution in the doctor-patient relationship that is likely to accelerate as a wealth of free, up-to-date medical research becomes available on the net The Cochrane Library will provide a new tool for the interested patient wanting a comprehensive, balanced and up-to-date overview of all research on their medical condition. The information is available on a CD-Rom but this is bought mainly by libraries.

The Cochrane Collaboration, established three years ago, was inspired by the epidemiologist Archie Cochrane, who worked on the first clinical trials of tuberculosis treatments 50 years ago. In 1979, he strongly criticised the medical profession for not having systematically reviewed the relevant literature - a criticism the Cochrane Collaboration is finally attempting to put right.

The collaboration includes more than 40 separate groups finding evidence and producing systematic reviews in different areas of medicine.

The Cochrane Cancer Network, part of the collaboration, is based in Britain and has more than 600 volunteers worldwide trawling electronically and by hand through medical journals of all types in a bid to bring together a comprehensive catalogue of all the controlled medical trials conducted in the field.

They have located around 12,000 randomised cancer trials, now being subjected to a systematic review. According to Chris Williams, who co-ordinates the Cancer Network, there may be up to 50,000 controlled cancer trials and up to a million controlled trials in all of medicine, many of which cannot be found easily in the mainstream literature.

"There are many biases in the literature," he explains. "Positive trials are more likely to be published than negative trials and are usually easier to find because they are in prestigious journals. If someone is bilingual it is often the positive trial which is published in English and the negative one in the other language."

As well as collating all trials, teams are reviewing methods used and results and aim to produce a systematic summary of their findings. Each of the teams is international and includes lay people, the idea being that the questions addressed and the summaries produced should be accessible to all. From early next year the trials and summaries will be available online. "By going online, it means more and more people can access the information," Dr Williams says.

"The network is aimed at everyone. When people have serious chronic illnesses, they often become experts in their own field. The Cochrane network is one way they will be able to get at much of the information available. In some situations, they are likely very quickly to have more information than their doctors.

"I think it will change the relationship between the doctor and the patient. There will be lots of people who want the information and will be able to get at it. They won't necessarily be able to put the information they obtain in context, but they will be able to present it to the doctor and discuss it. I think it will change the balance of the way medicine works, and will put different pressures on doctors.

"It is a very exciting time and a very positive thing," he adds. "But we need to start thinking about the issues it raises now."

He suggests that faced by patients with more information and a better understanding of a condition, doctors will find it increasingly hard to put up emotional barriers to open communication. "It will involve doctors spending more time with patients and will certainly involve lots of changes in the way we communicate with patients."

The National Health Service, the Medical Research Council and charities such as the Cancer Research Campaign are helping to meet the cost, which Dr Williams estimates will be many millions.

"We will never get it all done," he suggests. "It's a monumental task, particularly when you start thinking of all the questions you could ask of the data. We are starting by looking at the randomised trials and will then move on to the more anecdotal evidence. These questions may be of more interest to consumers. The reviews will have to be updated every time a new trial is done. It's never ending.

"It is very important that this is done as a way of improving clinical research. We will develop a wonderful database which will be important for planning new research and asking new questions. It will hopefully lead to more focused and more appropriate future clinical research."

For more information on the Cochrane Cancer Network see www.cochrane.co.uk or email cwilliams@canet.org.