1. www.renalpatientview.org Neil Turner, Edinburgh Cherry Bartlett, Leeds Renal PatientView

2. Making computers work for renal patients RIXG

3. Sample Proton screens

4. The worldNHSnet Renal server (e.g. Proton) Webserver Satellite unit Other hospitals

11. Treatment choices

23. Renal PatientView History Feb 2004Feasibility studies, proposal May 2004First funding Jun 2004Detailed spec, design and planning Nov 2004Live in Leeds Jan 2005Live in 4th pilot centre Jun 2005Broader extension Individualised online information for renal patients

24. January 2005<100 patients

25. January 2006850 patients

26. July 20062000 patients

27. Renal PatientView Remainder of 2006 Include non-Proton units - first ones nearly there? Remaining Proton units - it’s been offered Evaluation –Phase 4? –Report experience to other specialties

28. Renal PatientView Evaluation Cherry Bartlett Renal Informatics Manager Leeds Teaching Hospitals Trust

29. Objectives and Method Objectives – Content, existing and future – Security Issues, real and perceived – Benefits and Risks – Ease of Use – Barriers to Use Methods – Survey of users and non-users – Ethics approval for questionnaires to be used in six UK centres

30. Preliminary Findings Content – 95% of patients believed the website was very or quite valuable (65/30) – Results were the most valued part of the site – Letters were the aspect those who didn’t already have, wanted Security – Only 7% very concerned prior to use, dropping to 1% after – 82% never changed their password

31. Preliminary Findings (contd) Benefits and Risks – “Makes me feel more in control of my medical care”, 77% wholly or partly agree – “Gives me a better understanding of my renal disease”, 82% wholly or partly agree – “I read things that worry me”, 24% wholly or partly agree (40% wholly disagree)

32. Preliminary Findings (contd) Barriers to use – 64% of non-users had no knowledge of RPV prior to receiving questionnaire – Gender profile same between users and non-users – 45% of non-users over 66yrs cf 10.5% of users – Lack of computer/internet access regularly quoted Ease of use – Most users found the website very easy or easy to use and navigate

33. Comments made by Users “I felt like a pest keep ringing the hospital for my results after I had attended clinic – I now feel that my results belong to me” “The website is excellent. It is one of the best innovations I have encountered in the NHS (apart from medical advances) in my 50yrs involvement” “Patients don’t always take in what the medics say, and to be able to take time to read it properly in the comfort of your own home is wonderful! Keep up the good work” Winner NHS Leadership in Clinical Informatics Accolade 2006