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Engaging Clinicians and Patients in the Concept and Importance of
ActivationValuing Individuals -Transforming Participation
in Chronic Kidney Disease
Jonathon Hope
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
To a person centred approach…
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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
The Challenge… takes a long time to develop skills
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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
Co-producing health
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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
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
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!
Terminology
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EQ-5D-5LIPOS renal
Self developed
Patient Activation Measure (PAM)Clinician-support for PAM (CS-PAM)
• PAM– Patient Activation Measure– Skills, knowledge and confidence to manageyour 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
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
Your Health Survey Returns
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Cohort 1 UnitsTOTAL NUMBER OF RETURNS
Birmingham Heartlands Hospital (Heart of England NHS Foundation Trust) 111
St Luke’s Hospital (Bradford Teaching Hospitals NHS Foundation Trust) 180Coventry (University Hospitals Coventry & Warwickshire NHS Trust) 123Derby (Derby Teaching Hospitals NHS Foundation Trust) 112Hammersmith Hospital (Imperial College Hospital NHS Trust) 61King’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) 465Derriford 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) 116New Cross Hospital (Royal Wolverhampton NHS Trust) 61
Royal Stoke University Hospital (University Hospitals of North Midlands NHS Trust) 43Leeds (The Leeds Teaching Hospital NHS Trust) 0Total Returns 159
Phase 1 – CS-PAM Results
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CS-PAM - Clinicians’ beliefs and attitudes toward patient self-management
PAM: Patient Activation Measure
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Patient activation is a measure of how engaged people are in managing their own health
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 leastmoderately
Intervention Toolkit
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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
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
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
Richard FluckClinical Co-Chair Internal Medicine Programme of Care NHS [email protected]
Ron CullenDirectorUK Renal [email protected]
How to find out more
Karen ThomasThink Kidneys Programme ManagerUK Renal [email protected]
Rachel GairPerson Centred Care FacilitatorUK Renal [email protected]
Catherine StannardProgramme Support OfficerUK Renal [email protected]
Contact Think Kidneys
www.linkedin.com/company/think-kidneyswww.twitter.com/ThinkKidneyswww.facebook.com/thinkkidneyswww.youtube.com/user/thinkkidneyswww.slideshare.net/ThinkKidneyswww.thinkkidneys.nhs.uk
| 23Transforming Participation in Chronic Kidney Disease Rachel Gair