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![Page 1: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/1.jpg)
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
![Page 2: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/2.jpg)
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
![Page 3: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/3.jpg)
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
![Page 4: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/4.jpg)
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
![Page 5: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/5.jpg)
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.
![Page 6: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/6.jpg)
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
![Page 7: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/7.jpg)
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
![Page 8: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/8.jpg)
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
![Page 9: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/9.jpg)
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
![Page 10: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/10.jpg)
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.
![Page 11: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/11.jpg)
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
![Page 12: Development of an interactive patient information web site - the importance of consumer involvement Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews.](https://reader036.fdocuments.in/reader036/viewer/2022072013/56649e5d5503460f94b561c9/html5/thumbnails/12.jpg)
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
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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