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Doctors launch website on patients’ experiences of illness 7 July 2001 - The founder of a UK medical bulletin and an Oxford GP who had cancer have launched a website offering personal and informative health data for people with serious illnesses. The database of patient experiences of illness (DIPEx) is the brainchild of Andrew Herxheimer, former editor of the Drug and Therapeutics Bulletin, and GP Ann McPherson, who was diagnosed with breast cancer five years ago. The site will answer questions about what a diagnosis means and what the person should do about it, in addition to having video clips of people relating their experiences of illness and the impact it has had on their lives. The first two topics covered are hypertension and prostate cancer. They draw on research into patients’ experiences of their illness, which involved extensive qualitative interviews with patients around the United Kingdom. These are intended not just for those with the illness but also for their families and carers and health professionals, as well as for teaching medical students. Groups such as CancerBACUP and health professionals have contributed factual information. This includes answers to commonly asked questions and facts about the condition and its treatment. The site also has links to other useful sites, such as those of Macmillan Cancer Relief and the National electronic Library for Health. Further topics will be added through the year, starting with breast cancer, which will be launched in the autumn, and then cervical screening and bowel cancer. There is also a study under way talking to the carers of people with dementia, which will look at the ethical dilemmas involved in caring. Dr McPherson told the BMJ that what she found most helpful, when coming to terms with her illness, was talking to other patients. "Many people diagnosed with a serious illness feel that only people who have gone through what they are now going through can really understand and help them," she said. "DIPEx presents what it is really like for patients." She also explained that DIPEx is a registered charity, and so funding is a limiting factor to the number of illnesses they can cover. "Ideally we would like to cover most serious illnesses, however rare," she said. "However, we would need a huge injection of funds to make this possible. The initial funding — from the department of health and the various cancer charities, including Macmillan cancer relief and the Citrina Foundation—has enabled us to get the project off the ground." DIPEx is based in Oxford University's department of primary care. For further information go to www.dipex.org or email [log in to unmask] by Rhona MacDonald BMJ BMJ 2001;323:10 http://bmj.com/cgi/content/full/323/7303/10/b janet paterson: an akinetic rigid subtype, albeit perky, parky . pd: 54/41/37 cd: 54/44/43 tel: 613 256 8340 email: [log in to unmask] . snail mail: 375 Country Street, Apt 301, Almonte, Ontario, Canada, K0A 1A0 . a new voice: the nnnewsletter: http://groups.yahoo.com/group/janet313/ . a new voice: the wwweb site: http://www.geocities.com/janet313/ . ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn