1. Renal PatientView Birmingham 2nd Sep 2008 Neil Turner Renal PatientView

2. www.renalpatientview.org

3. Renal PatientView meeting Edinburgh 24 th September 2008 Joining Running Effects – on patients, staff, your work, your records What it might do in the future www.renal.org/rixg/users.html

4. Renal PatientView meeting Edinburgh 24 th September 2008 Joining – uptake, use, analysis Running – masterclass Effects – on patients, staff, your work, your records National and international perspectives What it might do in the future www.renal.org/rixg/users.html

5. Renal PatientView RIXG

6. Sample Proton screens

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

10. Aug 2008 8000 patients 33 units

11. Renal PatientView Design principles Internet: view anywhere Open source engineering Specification by patients, renal IT staff and clinicians All would share same view Implementation to require minimal extra work in units Simple to use for patients Opt in

13. Renal PatientView Design principles NHS number is primary identifier Results with same NHS # amalgamated EDTA code Treatment code … SNOMED, READ etc -ready

17. Treatment choices

28. Renal PatientView Patient evaluation Content – 95% very or quite valuable (65/30) – Results were the most valued part – Letters were the most wanted Security – 7% very concerned prior, 1% after – 2% of non-participants said this why – 40% shared their login

29. Renal PatientView Formal evaluation Barriers to use – 64% non-users didn’t know of RPV – Gender profile same – 45% of non-users over 66yrs cf 10.5% – Lack of computer/internet access

30. Renal PatientView Staff evaluation

31. Renal PatientView Impact on unit Not leading to extra consultation time Or patient anxiety Anecdotes of info availability helping Some improved compliance? Effect on data quality IT people speak to patients more

32. Renal PatientView Hidden cost? RPV admin’s extra time 6 mins per enrolment Lost passwords More corrections Versus savings Fewer phone calls about results Data quality Better compliance with treatment?

33. Renal PatientView Concerns Security Exclusion Cost/ opportunity cost

34. Renal PatientView What next? More units More items Graphics Availability through other portals

36. Renal PatientView What next? Patients discuss Patients enter data Patients send feedback to unit, clinician Primary care integration Your ideas

37. Renal PatientView Beach scene Further info neil.turner@ed.ac.uk www.renal.org/rixg/users.html [Caption competition]

38. neil.turner@ed.ac.uk www.edren.org