renalpatientview Neil Turner, Edinburgh Cherry Bartlett, Leeds

www.renalpatientview.org

Neil Turner, Edinburgh

Cherry Bartlett, Leeds

Renal PatientView

Renal PatientView

Making computers work for renal patients

RIXG

Sample Proton screens

The worldNHSnet

Renal server(e.g. Proton)

Webserver

Satellite unit

Other hospitals

Treatment choices

Renal PatientView

History

Feb 2004 Feasibility studies, proposal

May 2004 First funding

Jun 2004 Detailed spec, design and planning

Nov 2004 Live in Leeds

Jan 2005 Live in 4th pilot centre

Jun 2005 Broader extension

Individualised online information for renal patients

January 2005 <100 patients

January 2006 850 patients

July 2006 2000 patients

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

Renal PatientView

Evaluation

Cherry Bartlett

Renal Informatics Manager

Leeds Teaching Hospitals Trust

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

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

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)

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

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