First multimedia resource to give patients their own voice

A family doctors own diagnosis of breast cancer has led her to initiate a unique multimedia resource that uses patients actual personal experiences to help inform and support other patients and their carers, and to tell doctors what it is really like to be ill.

"Many doctors have admitted that they only realised how little they understood what it was like to be ill, when they became ill themselves. That was certainly true for me. I had the hard facts about breast cancer, but that was about it. I had no idea how it would affect me emotionally and I wanted to talk to others who had been through the same thing," Dr Ann McPherson, a general practitioner from Oxford in the UK, tolda news briefing at the 3rd European Breast Cancer Conference in Barcelona.

Dr McPhersons overwhelming sense of isolation gave her and colleague Dr Andrew Herxheimer the idea to set up DIPEx* (Database of Individual Patient Experiences) a website offering video, audio and text interviews with patients, who discuss what diagnosis and treatment was like for them, how they lived with their illness and how it affected their daily lives and that of their family and friends. The site also offers information on the illness itself, with links to other resources such as support groups, and a forum for feedback.

DIPEx has just launched its newest modules on breast cancer and bowel cancer and, in the long-term, plans to cover around 100 major illnesses. Modules on cervical screening and cancer will be launched in June and testicular cancer in September. Each module takes about a year to complete from research, analysis and review to building and launch and costs around 100,000GBP (approximately 164,000 Euros). The site was set up last July with introductory modules on hypertension and prostate cancer and received a million hits in the first six months.

"Anyone with a PC can access the site, whether from home, office, a local library or an internet caf," said Dr McPherson,

Contact: Margaret Willson
Federation of European Cancer Societies

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