A database of patients' experiences (DIPEx): A multi-media approach to sharing experiences and information
Herxheimer A., McPherson A., Miller R., Chapple A., Shepperd S., Ziebland S.
DIPEx (Database of Individual Patients' Experience of illness) is a new multimedia website (www.dipex.org) launched in July 2001. The plans were described in the Lancet last year. It links a database of patients' experiences of two serious conditions - essential hypertension and prostatic cancer - with evidence-based information about the illness and treatment options, and a range of other resources that may be useful, including support groups and hyperlinks to other websites. DIPEx aims to identify the questions and problems that matter to people when they are ill or have a health-related problem. It has great potential for informing patients and educating doctors, nurses and other health professionals, and it is a means of providing a patient-centred perspective to researchers, managers and those who commission health services. The DIPEx project combines a systematic collection and analysis of interviews with people about their experience of illness with evidence of the effects of treatments, and information about support groups and other resource materials. We believe that the DIPEx database is unique in the field of patient and healthcare communication. To ensure that it can operate independently of sectional interests it is now constituted as a charity governed by a board of trustees. The module for each condition included in the database begins with a videotaped summary of the interviews, with excerpts presented to illustrate the themes. Users can watch, listen to or read parts of the actual interviews. If they wish to move directly to particular topics, the keyword and hyperlink facilities will help them to navigate the site. The hyperlinks enable users to click on keywords to access other linked areas of the site, for example research evidence about the effectiveness of a specific treatment. The appeal and potency of illness narratives in written and electronic format has been amply demonstrated. However, even the many excellent descriptions of illness experience that exist are scattered and difficult to find when they are needed. The DIPEx project will draw together a single resource for all users, with relevant, evidence-based information and narratives reflecting the aspects of the illness that matter to those with the condition.