1. Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews and Alex Morrison University of Wales College of Medicine, Wrexham and Cognitive Applications, Brighton, UK

2. Introduction (1) There is increasing evidence that informing patients regarding their underlying disease can improve clinical outcomes This is particularly true for kidney disease - a chronic progressive, debilitating disease where patients –take numerous drugs for a variety of reasons and have dietary alterations –attend hospital for dialysis –make decisions regarding their future based on understanding risk and benefit of interventions

3. Introduction (2) Delivery of information to patients in the pre- dialysis phase or when dialysis has been commenced can lead to: –improved compliance/concordance –improved quality of life Internet based technology offers an additional resource with some clear advantages: –renewable resource –potential for interaction –accessible at all times

4. Aims of the project To develop an interactive renal patient information web site –with consumer involvement from the commencement of the project To achieve appropriate accreditation for the site

5. Project funding The project was the winning entry into the Wellcome Trusts Science on Stage and Screen Awards. This scheme is designed to bring modern scientific principles into the public arena.

6. Establishment of project team A project team was established: –patients - 35 year old PD, 39 HD, 56 PD and 74 HD (none with computer experience) –clinical staff (medical, nurses, social worker and dietitian) –medical information specialists –web designers The project team met regularly in the Renal Unit and critically the website designers met the patients and experienced the care process

7. Starting the Project Existing information was reviewed - paper, video etc Patients determined that the critical element was to inform regarding the health benefits of treatment to improve concordance Direct patient experiences were felt to be vital At each stage of the creative process there was direct interaction between team members

8. Basic principles Patients led the process to determine the style, colours, language and content of the site. Content was decided upon and included: –physiology of the kidney –disease processes, treatments and diets –dialysis options and transplantation –psychosocial factors –practical guidance for financial problems –links and feedback

9. Specific developments Www.kidneypatientguide.org.uk These include: –glossary of medical terms –patient quotes –animations to explain difficult concepts such as renal physiology, dialysis, fluid balance and transplantation –search facility –an interactive moderated bulletin board –a private e-mail service for questions

10. Accreditation The site was accredited by the Health on the Net Foundation - an independent organisation based in Switzerland. It has been awarded a five star status with the UK government sponsored patient information site - www.nhsdirect.nhs.uk - which provides a portal for the general public.

11. Response to the site Web stats show a large traffic of visitors to the site 2 surveys have been performed to assess the impact of the site –internet based survey –UK site survey

12. Conclusions (1) The www offers a new route for effective delivery of patient information with specific advantages over other methods. The success of this project was based upon patient involvement and a team approach even from the earliest stages. This direct interaction between the consumer group and the web site designers and writers was particularly effective and fruitful

13. Conclusions (2) Internet based information sites for patients with chronic disease are very useful and allow on-line discussion between patients and between patients and health care professionals The creative approach used in this project should be used in the future to ensure information is; –valid –timely –appropriate –presented in a way preferred by the patients