Yesterday I came across two very impressive websites run by a charity DIPEx based at the Department of Primary Care at the University of Oxford which supports the DIPEx Research Group. From the little I have read so far, it should be essential reading for all those dealing with serious illness.
Their stated aims are as follows:
- To share the experience of illness or a health problem and to provide support for patients and carers who may feel that they are on their own.
- Answer the questions and problems that matter to people when they are ill or have a health-related problem and to help them make informed decisions about their healthcare.
- Provide reliable, evidence-based information about illnesses or advice on health problems.
- Be an educational resource for health professionals.
- Promote better communication between patients and healthcare professionals.
The main content of the sites seem to be interviews with patients on their experiences. The illnesses range from heart disease to strokes to cancers to obscure things of which nobody has ever heard (unless, of course, you´ve got it). The founders (seemingly, medics themselves ... but don´t be fooled not every Dr. is a medic) of the charity and research group were themselves at the receiving end of treatment, inspiring them to initiate this project.
Much on the various leukaemias obviously.
The project does have a serious academic side which results in various papers each year which, I am sure, are a valuable contribution to the quality-of-life aspects of medical treatment (one aspect of the ALL trial, UKALL2003, in which we are participating, concerns quality-of-life issues).
The interviews are, given the serious, ¨academic¨ (Lucia said ¨geeky¨!), certainly non-patronising and interesting. I found that a lack of a distinct section for parents caring for young children was a slight weakness.
I would rate these sites up there with the Pediatric Oncology Resource Center and will duly link to them. And perhaps Cancer Research UK, the Leukaemia Research Fund, Teenage Cancer Trust, Macmillan etc should link to them as well.
And the Youth Health Talk section on What makes a good doctor should be required reading in every medical school!