News Release

First multimedia resource to give patients their own voice

Peer-Reviewed Publication

ECCO-the European CanCer Organisation

A family doctor’s 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 McPherson’s 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 café," said Dr McPherson, medical director of DIPEx. "We believe that DIPEx is a unique resource and the first of its kind in Europe. Our experience so far tells us there is a massive unmet need for this sort of service."

The DIPEx team are now talking with potential collaborators to produce modules or similar sites in other languages and have just been approached to produce a breast cancer module in Italian. They are also in discussion about a possible version in the USA.

There are plans for each illness module to be made available as a DVD for use in doctors’ surgeries, outpatient clinics, support groups, medical schools and teaching hospitals for use by patients, carers and health professionals.

Dr McPherson believes that it will have just as valuable a role for the health professionals as for patients. "The medical training syllabus has highlighted the need to listen to what patients are saying. But, in practice students can spend very little time with patients, especially those with unusual conditions, and doctors have a limited amount of time for each patient consultation. History-taking often still concentrates on the narrower requirements of reaching a diagnosis rather than finding out what it is actually like to have the illness.

DIPEx provide health professionals with a systematic analysis of patients’ experiences that should improve communication and lead to shared decision-making."

Future plans will also include reaching out to disadvantaged groups and ethnic minority communities, and the organisers believe that making DIPEx available in settings such as public libraries and information centres where help is available will enable those unfamiliar with the technology to share in the benefits.

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DIPEx is a registered charity currently funded by the UK Department of Health, Macmillan Cancer Relief (a cancer care charity), the Citrina Foundation and other charitable organisations and donations.

* DIPEx is being demonstrated by researcher Dr Suman Prinjha on stand D80 throughout the conference.

Contact: Margaret Willson: +34 93 36 44487 Mobile +44(0)7973 853347 or Emma Mason Mobile +44 (0)771129686


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