Patients' experience of illness is being collected on a database which both doctors and other patients can share. The missing ingredient in medical research is the patient's voice. It is all very well recording signs and symptoms, but doctors and researchers could learn a lot from the patient's ideas, beliefs and insights about their illness. It would help new patients too - showing they're not alone, and giving them vital information on managing their condition.
Doctors at the UK Cochrane Centre, are creating a unique database called DIPEx (Database of Individual Patients' Experience of Illness) which will record what patients with particular diseases think and feel about their condition, through interviews. These will be put onto a website that everyone can access. The first two groups are patients with high blood pressure and prostate cancer, respectively, and these will be followed by experiences of cancer of the breast, bowel and cervix.
AdvertisementThe site will also have lots of other useful and up-to-date information, as well as links to other relevant sites, including patient support groups. It's planned to include all the common serious diseases in DIPEx in due course, as well as gathering patients' experiences in other cultures and countries.