Jonathon Hope, from the Think Kidneys Transforming Participation in CKD team presented at The Kings Fund.

1. Engaging Clinicians and Patients in
the Concept and Importance of
Activation
Valuing Individuals -Transforming Participation
in Chronic Kidney Disease
Jonathon Hope

3. The Passive Patient
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 Healthcare can be
profoundly disempowering
 This can be even more
challenging when the
condition is highly
medicalised (e.g. ESRD)
 But most patients want to
be treated as active
participants – as co-
producers of health
Transforming Participation in Chronic Kidney Disease Rachel Gair

4. To a person centred approach…
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5. Day to day decision making: self management
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Hours with NHS / social care
professional = 5-10 in a year
Self management
= 8,750-55 in a year

6. The Challenge… takes a long time to develop skills
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7. So…
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The system should work in partnership with people with LTCs in
order to support them to develop the knowledge, skills and
confidence to manage their own wellbeing, health and healthcare

8. Co-producing health
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9. 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

10. Overall Aspiration
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 How do we change conversations and behaviours?
 We believe that targeting solely patients unlikely to
achieve necessary cultural change
 What are the characteristics within teams that support
and drive person centred care?
 How can this be shared with other LTC?
 Sustainability – no additional resource
 Co-production as a core value
Transforming Participation in Chronic Kidney Disease Rachel Gair

11. Organisational chart supporting co-production
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 NHS England (co-production champion) – UKRR
 Programme ‘Core’ group (patient and clinical leaders)
 Programme board – co chaired expert patient (co-production champion) and clinician
with 12/22 board members patients
 Workstreams – all 3 co-chaired by patient/clinical partnership and patient/clinical
workstream members
 Rachel Gair (co-production champion)
 Renal Unit working groups with clinical and patient members (the start of real
cultural change)
No co-production without representative governance!

12. Terminology
| 12Transforming 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

13. Engagement – HOW
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• 3 Learning Events – teams had to comprise 50% patients
• Teams developed a 30-60-90 day implementation plan
• Encouraged PDSA/AAL with each small cycle of spread
• PCCF – visits, calls, share learning, cohort calls, newsletters, bulletins
• Shared challenges and successes – peer assist
• Feedback of survey results to clinical teams and patients via PV
• Development of an Intervention Toolkit
Transforming Participation in Chronic Kidney Disease Rachel Gair

14. Your Health Survey Returns
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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

15. Phase 1 – CS-PAM Results
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CS-PAM - Clinicians’ beliefs and attitudes toward patient self-management

16. PAM: Patient Activation Measure
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Patient activation is a measure of how engaged people are in managing their own health

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. Intervention Toolkit
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19. Lessons Learned – Emerging Patterns
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 Empower patients from the beginning – governance
 ‘Be the change you want to see’ - mirror co-production culture change in
programme team and board
 Share power - Senior clinical champion + patient champion
 Leadership – moving towards changing practice
 Start small and build – QI cycles of change
 Engagement of whole patient/clinical team to really embed
 Different ways of working – volunteers – IT – process
 The power of patient involvement (e.g. measurement)
Transforming Participation in Chronic Kidney Disease Rachel Gair

20. Phase 2 – Spread and Sustainability
Transforming Participation in Chronic Kidney Disease Date | 20
 Continue spread across 14 units
 Continue re-surveying of patients – embedding
 Provision of workshops to units – discussing data + changing
practice
 Introduction of interventions:
 Ask 4 Questions
 Communication – using PAM in conversations
 Patient View
 Care planning – goal setting
 Peer support

21. Key messages so far
Transforming Participation in Chronic Kidney Disease Date | 21
 ‘Be the change you want to see’ - mirror co-production/ culture
shift you want to see in programme team and board
 Peer assist model supports cultural shift – vs. last year
 Developing a faculty system – group of experts
 Transferability to other LTC – far reaching change
 Influence commissioning approach – testing interventions
 No additional resource to units – supports sustainable change
 Patient stories – website
 PAM/CSPAM combination - powerful

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
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