An experiment in patient information using the internet
For first timers my advice would be to find out all you can about dialysis. Don’t be afraid of it…work around it and take control. You dialyse to live, you don’t live to dialyse.
The above quote comes from a patient attending the Renal Unit at Wrexham Maelor Hospital, many of whom have played a vital role in the development of a new web site: The Kidney Patient Guide.
Work done by Dr Peter Rutherford at Wrexham has shown that patients in Renal Units who are encouraged to learn about their condition improve their health. The Kidney Patient Guide ( www.kidneypatientguide.org.uk) is an attempt to extend that work onto the Internet; to reach a wide audience with a rich and interactive information service. If the project succeeds then it will provide a useful case study for future projects in other areas of health care where patients need information to help themselves get better. The project is a collaboration between Dr Rutherford; Tim Bowen Associates, a specialist health information consultancy; and Cognitive Applications Limited, an Internet and multimedia specialist. Thanks to Dr Rutherford’s involvement, the project has had an excellent level of input from patients and their families and from members of staff in the Renal Unit. We have also gained from the experience of Al Brookes, a specialist writer with a strong awareness of patients.
The project began as a successful proposal to the Wellcome Trust’s Science on Stage and Screen awards. Our first insight and the basis of the proposal, was that the Internet, with its possibilities for interactive animated graphics, would provide an excellent method of delivering information about biological and medical processes. These are important for kidney patients to understand because their condition is so directly affected by the underlying physiology of the kidney and its interaction with the way the patient behaves. The web site includes a series of animated features on important aspects of physiology and treatment including: how the kidneys work, how haemodialysis works, how fluid intake affects blood pressure and several others.
When we started work on the project at Wrexham it quickly became clear that a patient‐centred approach was at the heart of Dr Rutherford’s practice and that this should be reflected in the web site. This meant a shift in emphasis to prioritize material about human and emotional issues before medicine and physiology. The scope of the project expanded accordingly to include material on diet, holidays, carers, emotional issues, financial support and other social topics. All the material has been reframed in a way that we hope represents the interests and concerns of patients, and their families and carers.
To make it more responsive and useful, the site at www.kidneypatientguide.org.uk includes a search facility, a bulletin board where visitors can post messages and links to other relevant sites. A draft version of the site has been enthusiastically received by both staff and patients in Wrexham. We are now opening it to the public, and will begin the process of promotion, feedback, monitoring and maintenance. The site is registered in the web directories, and will be publicized to renal patients and clinics in the UK.
Following this successful development, the project team has decided to form an association, which is to be called Patient Information Projects, for the development of other similar projects in the future. Working together, the group will monitor comments and enquiries to the site and make sure that it stays up‐to‐date. There is enormous scope for expansion of the content, for accelerating the promotion of the service, and for diversifying into other specialty areas. The group is committed to further development and is actively looking for new projects, further support and partners.
Edited by Bob Gann