Rachel Gair, from the Think Kidneys Transforming Participation in CKD team presented Implementation and benchmarking data from UKRR at BRS 2017.

1. Patient Activation and Patient
Reported Outcome Measures -
Implementation and benchmarking
data from the UKRR
Valuing Individuals -Transforming Participation
in Chronic Kidney Disease
Rachel Gair

3. Context for TP-CKD Programme
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The Wanless report (2002) - costs will be unsustainable unless radical reform
takes place in the NHS with patients enabled to take more responsibility for their
care.
NHS England’s Five Year Forward View: (2014)
“a more engaged relationship with patients and communities to promote well-being
and prevent ill-health”
“to support people to manage their own health and care”
Transforming Participation in Chronic Kidney Disease Rachel Gair

4. NHS England
| 4Transforming Participation in Chronic Kidney Disease Rachel Gair

5. The Four Levels of Patient Activation
| 5Transforming Participation in Chronic Kidney Disease Rachel Gair

6. What are the questions the TP – CKD programme is asking?
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Can we routinely collect measures relating to patient/teams activation,
QOL outcomes and patient experience within 10 renal units?
Can we introduce interventions that will increase a patient’s and team’s
activation?
Does an activated patient have better outcomes?
Transforming Participation in Chronic Kidney Disease Rachel Gair

7. Terminology – Your Health Survey
| 7Transforming Participation in Chronic Kidney Disease Rachel Gair
EQ-5D-5L
IPOS renal
Self developed
Patient Activation Measure
(PAM)
Clinician-support for PAM
(CS-PAM)
PAM
Patient Activation Measure
Skills, knowledge and confidence to manage
your long term condition
PROMs
Patient Reported Outcome Measure
Quality of life
Generic
Disease specific
PREM
Patient Reported Experience Measure
Questions relating to their healthcare experience
All Renal Units X 1 per year

8. Phase 1 - Implementation
| 8Transforming Participation in Chronic Kidney Disease Rachel Gair
10 of the 52 adult renal units in England participated in the implementation of
‘Your Health Survey’ to measure patient activation, disease symptoms and quality
of life outcomes.
Each unit used a different approach to implementation resulting in survey returns
across the whole patient pathway.
The survey was handed out to patients as a paper copy by patient volunteers,
nursing and medical staff who had previously attended an initiation event and was
supported by information such as leaflets and posters.
Completed surveys were returned to the UK Renal Registry (UKRR) and scanned
into a database

9. Results – Phase 1
| 9Transforming Participation in Chronic Kidney Disease Rachel Gair
10 renal units in England submitted data as part of phase 1 of the TP-CKD
programme with 1,053 patients completing and returning the survey between
March and August 2016.
The majority of patients completed the survey on their own (58.8%) with 15.2%
receiving help from staff and 20.8% completing the survey with help from a friend
or relative.
The majority of surveys were completed at the renal unit (61.1%), although a large
proportion of surveys were completed at home (24.2%) and 10.2% of surveys were
completed in a clinic setting.
Almost 70% of patients completing the survey were older than 55 years of age with
only 2.6% completing the survey in the 18-24 age group.

10. | 10Transforming Participation in Chronic Kidney Disease Rachel Gair
Measurement Cycle

11. | 11Transforming Participation in Chronic Kidney Disease Rachel Gair
PAM Results

12. PAM: Patient activation is a measure of how engaged people are in managing their own health
| 12Transforming Participation in Chronic Kidney Disease Rachel Gair

13. Breakdown of PAM levels by Renal Unit
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14. Patient View
| 14Transforming Participation in Chronic Kidney Disease Rachel Gair

15. Percentage of patients by health aspect and age group who reported at least moderate problems
| 15Transforming Participation in Chronic Kidney Disease Rachel Gair

16. Your Symptoms
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17. PROM – Patient Reported Outcome Measure
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0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Not at all/slightly
At least
moderately

18. Phase 2 – Spread, Embed and Sustainability
Transforming Participation in Chronic Kidney Disease Date | 18
Continue spread across 14 units
Continue re-surveying of patients – embedding
Provision of workshops to units – discussing data + changing
practice
Introduction of interventions: Can they improve activation?
Ask 4 Questions
Communication – using PAM in conversations
Patient View
Care planning – goal setting
Peer support

19. Intervention Toolkit – Can they improve Activation?
| 19Transforming Participation in Chronic Kidney Disease Rachel Gair

20. Your Health Survey Returns
| 20Transforming Participation in Chronic Kidney Disease Rachel Gair
Cohort 1 Units
TOTAL NUMBER
OF RETURNS
Birmingham Heartlands Hospital (Heart of England NHS Foundation Trust) 111
St Luke’s Hospital (Bradford Teaching Hospitals NHS Foundation Trust) 180
Coventry (University Hospitals Coventry & Warwickshire NHS Trust) 123
Derby (Derby Teaching Hospitals NHS Foundation Trust) 112
Hammersmith Hospital (Imperial College Hospital NHS Trust) 61
King’s London (King’s College Hospital NHS Trust) 368
Freeman Hospital (Newcastle Upon Tyne Hospitals NHS Foundation Trust) 511
City Hospital ( Nottingham University Hospitals NHS Trust) 465
Derriford Hospital ( Plymouth Hospitals NHS Trust) 42
Northern General Hospital (Sheffield Teaching Hospitals NHS Foundation Trust) 326
Total Returns 2,299
Cohort 2 Units
TOTAL NUMBER OF
RETURNS
Royal Sussex County Hospital (Brighton and Sussex University Hospital Trust) 116
New Cross Hospital (Royal Wolverhampton NHS Trust) 61
Royal Stoke University Hospital (University Hospitals of North Midlands NHS Trust) 43
Leeds (The Leeds Teaching Hospital NHS Trust) 0
Total Returns 159

21. Key Messages So Far
| 21Transforming Participation in Chronic Kidney Disease Rachel Gair
Quality of Life Outcome measures can be routinely collected – in some cases better than
others
Characteristics/conditions enabling collection – co-production, champions, leadership,
commitment to the philosophy, whole unit engagement
1/3 patients reported feeling overwhelmed by their illness, and felt that their doctor made the
decisions about their health. A 1/3 had the knowledge, skills and confidence to be part of their
health care team.
Many patients felt they lacked the confidence to work out solutions when new health
problems arose and did not feel able to maintain lifestyle changes.
More than half of all patients reported being bothered by lack of energy. Poor mobility, pain
and difficulty sleeping were also very common.

22. Next Steps
| 22Transforming Participation in Chronic Kidney Disease Rachel Gair
Ground breaking and Innovative Programme
No additional resource – sustainable
Exemplar for other LTC
Commissioning pathway
Correlation between PAM/PROM
Interventions

23. Richard Fluck
Clinical Co-Chair Internal Medicine
Programme of Care NHS England
Richard.fluck@nhs.net
Ron Cullen
Director
UK Renal Registry
Ron.cullen@renalregistry.nhs.uk
How to find out more
Karen Thomas
Think Kidneys Programme Manager
UK Renal Registry
Karen.thomas@renalregistry.nhs.uk
Rachel Gair
Person Centred Care Facilitator
UK Renal Registry
Rachel.gair@renalregistry.nhs.uk
Catherine Stannard
Programme Support Officer
UK Renal Registry
Sarah.evans@renalregistry.nhs.uk
Contact Think Kidneys
www.linkedin.com/company/think-
kidneyswww.twitter.com/ThinkKidneys
www.facebook.com/thinkkidneyswww.
youtube.com/user/thinkkidneyswww.sl
ideshare.net/ThinkKidneyswww.thinkki
dneys.nhs.uk
| 23Transforming Participation in Chronic Kidney Disease Rachel Gair