Renal PatientView Sep 2008 Neil Turner

Shots from RPV, arranged as if you are clicking through it Shots from RPV, arranged as if you are clicking through it. This is the screen you see at www.renalpatientview.org. Click on ‘view a demo’ at the foot of the page … www.renalpatientview.org

Renal PatientView RIXG Organisations represented on RIXG

Sample Proton screens First thing docs and patients asked about was could they see results online without having to ring up for them Sample Proton screeens (these ones are from Edinburgh) showed that these figures were already in computers on units, patients said ‘that’s what we want to see’

And indeed this is what they see And indeed this is what they see. Clicking on the Results tab takes you here. The heading of each column links to info about the test …

The heading of each column links to info about the test …

NHSnet The world Satellite unit Other hospitals Renal server (e.g. Proton) The world Webserver RPV solution. Red arrows mean data transfer is encrypted. Renal server sends daily (at the moment, could be more frequent) downloads of data from records of opted-in patients. Satellite unit Other hospitals

Aug 2008 8000 patients 33 units

Design principles Renal PatientView 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

This is what you see when you log in with your username and password Now click on Patient Info …

Here is info arranged according to the patient’s diagnosis and treatment. The links at the bottom (‘Further Info’) are shown for all patients. We may add ‘Additional info for children’. The info linked from these has been selected by, but is not written by the RPV team. A multidisciplinary group is being assembled to review and update the info links provided (the RIXG Information Review Panel). Here are some examples of info according to diagnosis, in this case diabetic nephropathy …

e.g. for a patient with diabetic kidney disease. From the NKF …

For a patient not on dialysis and not tranpslanted, this is one of the links (from EdRen). Down the page …

Treatment choices Is info about the different treatment options, including Conservative Management

A link for a haemodialysis patient

Working along the tabs, here are results again Working along the tabs, here are results again. There are 4 screens but could be more; they include tests of kidney function, anaemia, blood pressure, dialysis adequacy, and more.

Medicines are at the moment exactly as recorded in the renal unit’s computer system so a number of cautions are necessary at the top.

Although we were initially a little concerned about the possibility that letters might be the most sensitive elements of the record, they have been extremely popular and are the most requested item in units where they aren’t shown.

Now click on Patient Info …

Patient evaluation Renal PatientView In essence – extremely positive (details available) Tests are the things looked at most frequently 40% of patients have shared passwords with others and we know some are dependent on others for access Little extra work to maintain

Formal evaluation Renal PatientView 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 the second most common stated reason Little extra work to maintain

Impact on unit Renal PatientView Not leading to extra consultation time Or to increased patient anxiety Anecdotes of info availability helping patients beyond simple confidence Some improved compliance? Effect on data quality – direct and indirect IT people speak to patients more Little extra work to maintain

Hidden cost? Renal PatientView RPV admin’s extra time 6 mins per enrolment Lost passwords More corrections (a good thing though) Versus savings Fewer phone calls about results Data quality Better compliance with treatment? Little extra work to maintain

Availability through other portals Renal PatientView What next? More units More items Graphics Availability through other portals Mention more data, more units

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

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

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