Valuing Individuals - Transforming Participation in Chronic Kidney Disease

https://www.thinkkidneys.nhs.uk/ckd/

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 Transforming Participation in Chronic Kidney Disease Rachel Gair | 3

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

Person Centred care – co-producing health Transforming Participation in Chronic Kidney Disease Rachel Gair | 5

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 Transforming Participation in Chronic Kidney Disease Rachel Gair | 6

The Passive Patient Healthcare can be profoundly disempowering But most patients want to be treated as active participants – as co- producers of health Transforming Participation in Chronic Kidney Disease Rachel Gair | 7

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. Transforming Participation in Chronic Kidney Disease Rachel Gair | 8

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 Transforming Participation in Chronic Kidney Disease Rachel Gair | 9

Low activation = problems and opportunities Transforming Participation in Chronic Kidney Disease Date | 10

A development scale Transforming Participation in Chronic Kidney Disease Rachel Gair | 11

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 Transforming Participation in Chronic Kidney Disease Rachel Gair | 12

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) Transforming Participation in Chronic Kidney Disease Rachel Gair | 13

2nd cohort – renal teams New Cross Hospital - Wolverhampton Royal Stoke University Hospital St James’ - Leeds Royal Sussex - Brighton Transforming Participation in Chronic Kidney Disease Rachel Gair | 14

Valuing Individuals - Transforming Participation in Chronic Kidney Disease

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

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

Transforming Participation in Chronic Kidney Disease Rachel Gair | 18

Click here for Patient View Transforming Participation in Chronic Kidney Disease Rachel Gair | 19

PAM results Transforming Participation in Chronic Kidney Disease Rachel Gair | 20

Clinical spreadsheet returns Transforming Participation in Chronic Kidney Disease Rachel Gair | 21

Patient Activation Levels Transforming Participation in Chronic Kidney Disease Rachel Gair | 23

Doing usual activities Overall Health (1) Walking about Washing / dressing Doing usual activities Transforming Participation in Chronic Kidney Disease Rachel Gair | 25

Overall Health (2) Having pain or discomfort Being anxious or depressed Transforming Participation in Chronic Kidney Disease Rachel Gair | 26

Symptoms Transforming Participation in Chronic Kidney Disease Rachel Gair | 28

Cohort data - % of staff by activation level (CS-PAM) Transforming Participation in Chronic Kidney Disease Rachel Gair | 29

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? Transforming Participation in Chronic Kidney Disease Rachel Gair | 30

E- Learning – Coaching ( Insignia) For the Renal Registry Group: URL:  http://training.insigniahealth.com 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 Transforming Participation in Chronic Kidney Disease Rachel Gair | 31

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 Transforming Participation in Chronic Kidney Disease Rachel Gair | 32

The Intervention Pyramid Transforming Participation in Chronic Kidney Disease Rachel Gair | 33

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 Transforming Participation in Chronic Kidney Disease Rachel Gair | 34

Knowledge, skills and confidence Transforming Participation in Chronic Kidney Disease Rachel Gair | 35

Contact Think Kidneys How to find out more Karen Thomas Richard Fluck Think Kidneys Programme Manager UK Renal Registry Karen.thomas@renalregistry.nhs.uk Rachel Gair Person Centred Care Facilitator Rachel.gair@renalregistry.nhs.uk Sarah Evans Think Kidneys Programme Coordinator Sarah.evans@renalregistry.nhs.uk 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 www.linkedin.com/company/think- kidneyswww.twitter.com/ThinkKidneys www.facebook.com/thinkkidneyswww. youtube.com/user/thinkkidneyswww.sli deshare.net/ThinkKidneyswww.thinkkid neys.nhs.uk Transforming Participation in Chronic Kidney Disease Rachel Gair | 36