12 October 2001 News Update

HEARING WHAT PATIENTS SAY

All patients have something to say about their illness that, if listened to, can help doctors to take care of them with greater efficiency.

''Anyone with an illness, and that is all of us at some time, can learn from the experiences of others, often take comfort from them, and contribute to better management of the problems in the future,'' said Dr Andrew Herxheimer of the Cochrane Centre in Oxford, southern England.

Addressing the British Association Festival of Science in Glasgow, Dr Herxheimer announced the launching of a new database of individual patient experience (Dipex).

Set up by an Oxford medical team with government backing, Dipex will provide seriously ill patients with a 24-hour web access - via video clips, recorded voices and written accounts - to the experiences of others who have suffered similar illnesses.

The website (at: www.dipex.org) is also designed to be a valuable teaching resource for the training of doctors, nurses and other health professionals. The information will also be made available on disc in public libraries, surgeries and hospital outpatient departments.

''Clinical research addresses questions that investigators and funders of research consider scientifically important, but they often do not consider aspects that matter to the patients who have the disease,'' said Dr Herxheimer.

''It is astonishing that no systematic attempt has been made todiscover from patients what they are most concerned about. Mostly, their experience is ignored and dies with them. Dipex will fill that gap. The core consists of narrative interviews with 40 or more patients who have a particular disease,'' he added.

The first two are high blood pressure and prostate cancer. These will be followed by cancer of the breast, bowel and cervix. One can see, hear or read what people say about different aspects of their condition . The website also has reliable up-to-date information about the condition and links to self-help and support groups. There is also a discussion forum for each disease.

''Dipex offers a method and a system for enabling patients with all diseases or health problems to be heard and listened to, for new patients to find out that they are not alone, and to be better prepared for what may happen. All self-help groups and support organisations can join in and we hope that stories will be collected from patients from other cultures and languages, eventually,'' said Dr Herxheimer.

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