1. Valuing Individuals - Transforming Participation
in Chronic Kidney Disease

3. Context for TP-CKD Programme
NHS England is required by the NHS Mandate
‘to involve patients and their carers, and empower them to manage and make decisions about their own care and treatment’
‘enhance quality of life for people with long term conditions’ and ‘embrace opportunities created by technology’
All people with a long term condition to have a personalised care plan by 2020
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4. NHS England
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5. Person Centred care – co-producing health
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6. Why person centred care?
UK health services face big challenges
population increasing in size and age
people living longer with multiple conditions
severe financial constraints
Person centred care can help to improve outcomes and reduce burden
How can we work in partnership to support people when they are not in contact with the service?
Ethically it’s the right thing to do – a person’s right to be involved
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7. The Passive Patient Healthcare can be profoundly disempowering
But most patients want to be treated as active participants – as co- producers of health
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8. To a person centred approach….
… but not so far to the extreme as to make the arrival at a decision unlikely! Many patients now have access to a lot of information on the internet – not all of it reliable or balanced. The challenge is to ensure we are working with patients as partners but ensuring they have good information on which to base their decisions.
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9. What is ‘activation’ and why?
An activated person has the knowledge, skill and confidence to manage their own health and care
This means
making informed choices
being a partner in their own care
self management and prevention
Better health outcomes
Quality of Life
Increased independence + control
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10. Low activation = problems and opportunities
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11. A development scale
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12. Co-production as a core value
What are the questions the TP – CKD programme is asking?
Can PAM/CS-PAM/PROM/PREM measures be collected routinely within renal units?
Is the PAM related to PROM/PREM/Clinical results?
Can we introduce interventions that will increase a patient’s and team’s activation?
Co-production as a core value
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13. The first cohort of Renal Unit Teams
Birmingham Heartlands Hospital (Heart of England NHS Foundation Trust)
St Luke’s Hospital (Bradford Teaching Hospitals NHS Foundation Trust)
Coventry (University Hospitals Coventry & Warwickshire NHS Trust)
Derby (Derby Teaching Hospitals NHS Foundation Trust)
Hammersmith Hospital (Imperial College Hospital NHS Trust)
King’s London (King’s College Hospital NHS Trust)
Freeman Hospital (Newcastle Upon Tyne Hospitals NHS Foundation Trust)
City Hospital ( Nottingham University Hospitals NHS Trust)
Derriford Hospital ( Plymouth Hospitals NHS Trust)
Northern General Hospital (Sheffield Teaching Hospitals NHS Foundation Trust)
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14. 2nd cohort – renal teams
New Cross Hospital - Wolverhampton Royal Stoke University Hospital St James’ - Leeds Royal Sussex - Brighton
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15. Valuing Individuals - Transforming Participation
in Chronic Kidney Disease

16. What are the questionnaires and how do they all fit together – TP-CKD
Your Health Survey
Symptoms IPOS Renal
17 questions &
Overall Health ED-5DL 5 questions = PROM
Renal Registry
Who/Where/how
10 questions
PAL spreadsheet
Managing Your Health = PAM
13 questions
CS PAM

17. What are the questionnaires and how do they all fit together – SHAREHD
Your Health Survey
Symptoms IPOS Renal
17 questions &
Overall Health ED-5DL 5 questions = PROM
Renal Registry
Who/Where/how
10 questions
PAL spreadsheet
Uptake Indicators
8 memory, 3 comprehension 2 access
Health Ecomonics
8 questions
Managing Your Health = PAM
13 questions
Task Summary & HHD option
14 tasks &1 questions
Demographics
10 questions

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19. Click here for Patient View
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20. PAM results
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21. Clinical spreadsheet returns
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23. Patient Activation Levels
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25. Doing usual activities
Overall Health (1)
Walking about
Washing / dressing
Doing usual activities
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26. Overall Health (2) Having pain or discomfort
Being anxious or depressed
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28. Symptoms
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29. Cohort data - % of staff by activation level (CS-PAM)
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30. Changing Behaviours and Culture
How do we make this sustainable?
How do we bridge the gap between data and change in practice?
How do we encourage patients be more activated and target conversations/education to improve this?
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31. E- Learning – Coaching ( Insignia)
For the Renal Registry Group:
URL: 
Username: renalregistrytraining8
Password: renalregistrytraining8
PAM 101
8   minutes
PAM 101 provides an overview of the Patient Activation Measure, including development, validation, and use
Personas
10 minutes
In the persona’s course, you will learn common attributes that individuals at different Levels of Activation possess, as well as what new behaviors they are capable of taking on
Administration
9   minutes
In the Administration module you will learn how to properly administer the PAM to get valid, reliable results without introducing bias
Coaching for Activation
17 minutes
(+ with quiz)
The Coaching for Activation® course it all gets pulled together. Now that you know a person’s Level of Activation, how do you engage them? In this course you will learn how to tailor goals and interventions to be appropriate for an individual based on their Level of Activation
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32. Coaching
Are symptoms affecting PAM score and then impacting on tasks fulfilled
Are patients being encouraged to look at PV screens
How are staff engaging with feedback of PAM/PROM as in changing conversations/behaviours
Are staff encouraged to coach to improve tasks
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33. The Intervention Pyramid
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34. Examples of Interventions used
Training for staff on PV
IPAD interaction with PV whilst on HD
Ask 4 Questions
Care planning
Letters to patients
Least activated patients make the most gains
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35. Knowledge, skills and confidence
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36. Contact Think Kidneys How to find out more Karen Thomas Richard Fluck
Think Kidneys Programme Manager
UK Renal Registry
Rachel Gair
Person Centred Care Facilitator
Sarah Evans
Think Kidneys Programme Coordinator
Richard Fluck
Clinical Co-Chair Internal Medicine Programme of Care NHS England
Ron Cullen
Director
UK Renal Registry
kidneyswww.twitter.com/ThinkKidneys youtube.com/user/thinkkidneyswww.sli deshare.net/ThinkKidneyswww.thinkkid neys.nhs.uk
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