Summary

Database of Individual Patient Experiences (DIPEx) web site: www.DIPEx.org

DIPEx is an internet-based multimedia resource. It tries to respond to the needs of people recently diagnosed with an illness by providing both clinical information and the experiences of individual patients. 'To be diagnosed with an illness can be bewildering and frightening, especially if there is no-one around to tell you the things you really want to know'. DIPEx includes video clips, sound (testimonies of patients), and links to web sites which are reliable, but have a more specific focus, such as cancer. DIPEx itself represents an unusual collaboration between health professionals and consumer groups. It is a not-for-profit organisation funded by the UK Department of Health, Macmillan Cancer Relief, the Citrina Foundation, the Consumers Association and the Lord Ashdown Trust.

Scope

The web site is divided into modules based on particular conditions. As funding becomes available it is intended to include 'experiences of all the main illnesses'. Topic information is organised into categories of diagnosis, such as colorectal cancer, together with relevant tests, investigative procedures and links to condition-specific web sites, for example Cochrane and Cancer BACUP. Links to patient experiences are a key feature of the site which also invites people to volunteer to tell their own story. The focus of these 'stories' is patient responses to particular treatments, yet the web site does not include evidence about risks of these treatments or procedures. The patient comments do include concerns and experiences of, for example, adverse effects.

Audience

Although its stated aim is to meet the needs of patients, DIPEx is also intended to play an educational role for health workers. It is likely that the site will be more successful in achieving this aim than in its more ambitious aims. In particular it is questionable to what extent it can substitute as a support group for people who are looking for timely answers to non-medical questions. However, links are provided to various support groups.

Limitations

The web site does not acknowledge that what people often need is immediate support and information about what might be available. In addition, because DIPEx aims at that 'window of opportunity' between diagnosis and treatment it is health-system focused and does not cater for the concerns of people with long-term illness.

The site uses DISCERN quality criteria for evaluating medical information on treatment choices. DIPEx claims to provide 'balanced encounters between patients and health care professionals'. However, the site content appears to be written by health professionals accompanied by links to patient testimonies. A more robust approach might be to establish an advisory group for each illness dealt with, giving both patients and practitioners equal say in the content and design of the site.

The partnership approach is badly let down in two further ways. Firstly, the background provided by health professionals is not supported by evidence or referenced. Secondly, patient testimonies consist of one person's experience rather than a range of experiences. Yet the experience of one patient invariably differs from the experience of another person. There is no evidence or discussion about factors that may influence different experiences of the same procedure or diagnosis, for example socio-economic status, current health status and life experiences.

The links to patient experiences are strangely disembodied. They do not offer the patient's story as such. Rather they are snippets of people's experiences provided in response to predefined questions. For example, 'What will it be like having this operation or taking these drugs?'

Currently, the DIPEx web site does not capture the iterative process between people in self-help groups. This means that the site itself cannot provide the kind of 'mutual support and information sharing' in the rehabilitation process that self-help groups offer. However, DIPEx is innovative in its attempts to bring together professional concerns and consumer responses. This may be particularly useful to isolated consumers who do not have access to support groups. In addition DIPEx may prompt others to seek out actual rather than virtual support groups.