Valuing Individuals – Transforming Participation in Chronic Kidney Disease

Valuing Individuals – Transforming Participation in Chronic Kidney Disease

Learning and Sharing Event – Cohort 1

18 November 2015

Welcome and Housekeeping

Patricia Muramatsu

NHS England

Welcome and Housekeeping #empoweredpatients

Transforming Participation in CKD Programme – Learning & Sharing Event – 18/11/15 | 3

Programme for the Day

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09:30 Registration opens and tea/coffee and snack available 10:30 Welcome and housekeeping 10:35 Overview of Programme by Richard Fluck and Jonathon Hope 11:00 Programme Methodology by Rachel Gair 11:20 Q&A Session 11:30 Health Foundation Presentation by Helen Crisp 12:00 Learning Needs Analysis – Group Work in Renal Teams 13:05 Feedback from Group Work 13:20 Lunch 14:00 Renal Unit Plans – 30-60-90 Day Group Work 14:50 Renal Unit – ‘Buddy Up’ 15:30 30-60-90 Day Revisions 15:45 Key message feedback 16:15 Next Steps 16:30 Close

Transforming Participation in CKD Programme – Learning & Sharing Event – 18/11/15

Overview of the Transforming Participation in CKD Programme

Richard Fluck

National Clinical Director for Renal Disease, NHS England

Five Year Forward View: Patient Participation

| 6 Transforming Participation in CKD Programme – Learning & Sharing Event – 18/11/15

What is activation?

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• An activated individual:

• Has the knowledge, skill and confidence to take on the role of managing their health and health care

• Informed choices

• Partner in care

• Self management/prevention

• Activation varies within age, income, education groups, even among people with low literacy skill

• Demographics tend to account for 5% to 6% of PAM score variation


Patient Activation Measurement (PAM)


Activation Level is Predictive of Behaviours

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• Research consistently finds that those who are more activated are:

• Engaged in more preventive behaviours

• Engaged in more healthy behaviours

• Engaged in more disease specific self-management behaviours

• Engaged in more health information seeking behaviours


Hypothesis for programme

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Phase 1

• Can we gather PAM/CSPAM/PROM/PREM measures routinely?

Phase 2

• Can we bring in interventions that will increase a patient’s activation, segmented by PAM status, either directly or via effects on CSPAM?

• Are changes in PAM associated with improved outcomes across multiple dimensions?

Co-production as a core value


Skills, Knowledge and Confidence Matrix


The mission for today

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How are you going to introduce patient activation measures (PAM) and Clinician support for PAM measures (CSPAM), patient reported outcome measures (PROM) and patient reported experience measures (PREM) into routine use within your departments?


Overview of the Transforming Participation in CKD Programme

Jonathon Hope

Programme Board Co-Chair





Programme Methodology

Rachel Gair

Person Centred Care Facilitator


To a patient centred approach…


Person Centred Care

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• Remember - Patients are ‘experts’ by their own experience

• Recognise - individuals own goals are what counts – it isn’t ‘to’ and ‘for’ but ‘with’ – Well being and independence are key outcomes of care

• Responsibility – Provision of tools and support people to take action and responsibility – action their own health & well being in partnership

• Support - to recognise and develop own strengths and abilities to enable them to live an independent and fulfilling


Why Person Centred Care - Equality

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• Challenging the concept of the ‘passive’ patient

• Replacing it with expectation on both sides of equivalently active roles in delivering a service/outcome

• Improving Skills, knowledge and confidence – patients and staff

• Recognising skills gifts and talents as well as needs

• We can’t magic up health and well being for another person – we know motivation changes outcomes


What are the questions the programme is asking?

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• Can PAM/CS-PAM/PROM/PREM measures be collected routinely within renal units?

• Is the PAM related to PROM/PREM/Clinical Measure results?

• Can we introduce interventions that will increase a patient’s activation?

Co-production as a core value


Patient Activation Measure – PAM?

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• It is a survey of 13 questions

• It encourages the responder to think about how engaged and confident they feel in participating in health care decisions

• There is no right or wrong answer – it is individual

• The survey is ‘scored’ and used by you and the nurse/doctor to support your appointment


Patient Activation Measure – PAM?


Patient Reported Outcome Measure – PROM?

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• An additional 22 questions about your symptoms, how you are feeling and how you manage your everyday life.

• We want to find out about YOU as a whole person and your health and wellbeing - more than just your kidneys

• These questions will act as a prompt for you and the doctor/nurse to highlight what is important and what needs addressing – short & long term


Patient Reported Experience Measures – PREM?

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• Questions and themes about your care, the service, the environment, transport etc.

• These will be anonymous and won’t be seen by the clinical team

• They will be fed back to the team to inform service improvement


Clinical Support – Patient Activation CS-PAM

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• Do the renal teams and individuals support patient activation?

• Do they have the skills, knowledge and confidence to move to equal partners in care?

• Potential risk of conflict – activated patients but not clinical teams

• The results of the CS-PAM fed back to individuals but also provides a ‘heat map’ of the culture of the unit and what is required to gain a shift

• This is not about judgement but about Quality Improvement


How are you going to begin?

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• Recommend the surveys are done with patients every 3 months as a minimum but may be done more regularly

• Paper to start with – develop on line Patient View access

• Start small in the 30-60-90 day plan and grow by 90 days

• Find out what works and what doesn’t work – record

• Peer Assist

• Peer Review

• Action Review


Challenges

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• Time

• Resource

• Work force

• Skills

• Other initiatives

• Not a priority

• We are already doing it


Example 1 – haemodialysis unit

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Haemodialysis patients – start small – every Wednesday/Thursday

• Handed paper questionnaire when accepted invitation to participate

• Either take it home or fill it in whilst on dialysis

• Hand it to nurse/doctor

• PREMS placed in closed post box

• PAM/PROM inform next discussion either on unit or in OPD

• Paper surveys sent by unit to UKRR

• UKRR generates feedback to patient and staff


Example 2 - Outpatients

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Pre-dialysis/Transplant – target a Monday pm clinic, a nurse led Tx clinic, individual consultant clinic

• Patients are handed surveys on attending OPD – each session

• Fill in surveys and take them into appointment

• Informs discussion - feedback

• Recorded in notes

• Surveys sent to UKRR

• PREMS posted in closed box


Example - Patient Volunteers

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• Utilise peer supporters to assist in helping with surveys on HD unit or OPD

• Utilise Trust volunteers

• Hand out patient leaflets and act as a resource for other patients

• Wear T – shirts to define role


What is Peer Assist?

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A Peer Assist, also known as 'Learning before doing', is about a team asking for help

from their peers:

• People are invited to share their experience, insights and knowledge with the

team asking for help

• There would tend to be a spirit of reciprocity where people contributing would

be able to request help from the others to work on their own team's issues

• Check whether others have faced similar issues/ solved the problem

• Hold a problem solving/knowledge sharing session that involves the assisters

working together and presenting their recommendations and learning back to

the team after an initial briefing session

• Agree actions and any further reporting of progress


What is Peer Review?

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• Peer review is a process used for checking the work performed by one's equals (peers) to ensure it meets specific criteria. Peer review is used because it is thought that peers can identify each other's errors quickly and easily, speeding up the time that it takes for mistakes to be identified and corrected

• Generally, the goal of all peer review processes is to verify whether the work satisfies the specifications for review, identify any deviations from the standards, and provide suggestions for improvements


After Action Learning

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• The role of the PCC

• What did we expect to happen

• What happened

• What did we learn

• What will we do differently as a result

• Keep a log

• Regular contact with PCC to capture learning – telephone & F2F


Timings and Support


Cohorts


Implementation – the ask!

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• Begin collection of measurements across the whole pathway

• Start ‘small’ and then spread – OPD, HD, HHD, PD, TX

• Begin collection of CSPAM in each unit – building a heat map of unit

• We are looking at whether this is feasible – can this be done

• Not looking at comparing data from unit to unit – individual unit culture

• It won’t be significant or enable analysis as there will be bias/insufficient numbers

• Data is secondary – this is about improving the care that you deliver




Karen Thomas

UK Renal Registry

Q & A Session

11.20-11.30

Helen Crisp

Health Foundation

Quality Improvement Resources

11.30-12.00

Health Foundation approaches to improvement Helen Crisp Assistant Director of Research

18th November 2015

Our mission: To improve quality of health and healthcare

1983 – Private Patients’ Plan Medical Trust established

1998 – sale of PPP to commercial insurer endows charity with £540 million

• Focus: medical research

2003 – re-launched as The Health Foundation focus on

• Improving quality of care

• Patient safety

• Person-centred care

2013 – New CEO – broader aims covering:

• Improving quality of care

• Health policy analysis

• Population health

Background to the Health Foundation:

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What do we want?

43

Better health and health care

How does the Health Foundation help to achieve this?

44

Across the three areas of focus we:

test innovations and spread what works

build skills and knowledge

develop and share the evidence base

Research-led, theory-informed PERSON-CENTRED CARE

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What are the aims for person-centred care?

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• Better experience of care

• Better clinical outcomes

• Better use of health care resources

Our quick guide to help introduce the concepts

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What is person centred care?

Why is person-centred care so

important?

How has person-centred care

developed?

Putting person-centred care

into practice

FAQs

What are the challenges?

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• Perceptions of health care staff about person-centred care

We already do this


50


We already do this

Surveys in the NHS consistently report that over 40%

inpatients would like more involvement in decisions about

their care


51


• The changes require social and cultural changes more than

technical solutions


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• The changes require social and cultural changes more than

technical solutions

• The evidence base is weak, contested and confusing

- Evidence review of shared decision making found 160

different definitions

- Many other studies with no definition

- ‘Same’ approaches have very different results

A research-led approach to person-centred care?

53

• Theory-based interventions using tested

methods

• Written up using SQUIRE guidelines

• Outcome measures; personal, process, clinical

• Robust evaluation using a range of innovative

methods

Why is research important for improvement?

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To understand what we’re trying to do

To measure what we are doing and if it’s working

To report our work so others can learn

All publications available to download from:

http://www.health.org.uk/publications

Evidence Scans and Reviews

http://www.health.org.uk/publications

Original research

56

If you read one thing….

The Health Foundation has focussed primarily on two areas:

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Self-management support

Shared decision making

What works?

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Self-management support approaches

Motivational interviewing

Goal setting and action planning

Group-based educational

models Peer support


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Goal setting and

action planning

Peer support

Counselling-oriented approach

to consultations

Aims to shift from medical model

to one to one support that

facilitates behaviour change

Used in Co-Creating Health to

train professionals

“ a professional life-changing event”

Training in

motivational

interviewing

described as:

Self-management

support approaches

61

Care and support planning

Goal setting and action planning

• Approach to help people

more effectively manage

long-term conditions

•Builds confidence by setting

attainable goals that matter

to the individual and step by

step plans to reach them

Key feature of Co-creating

Health


62

Short courses for groups of people with

similar condition to support self-

management often led by an individual

who has a long term condition

“I’m happy for starting the group when I did. Learning things, pacing, helped to sort my life.”

STOP! Project in Dorset:

Group sessions to help people

live with chronic back pain


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Peer support

Group or one to one support from someone who lives with a

similar condition

Underpinned by key value of reciprocity

I’ll never be the same person I was before my diagnosis but peer support coaching has made me believe in a future where I can recover and develop the new me”

2Gether NHS Foundation

Trust: Coaching for recovery:

Effective shared decision making

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• Decision aids

• evidence based

• include pros and cons of each

option

• use real-life examples

• use diagrams and visuals

“All need skills to use and attitude

trumps skill”

65

Evidence

based

Two options

FAQs

Option grid

breast

cancer

surgery

66

“ ‘Decision aid’ sounds very posh but it’s not ..This was about involving people in their care, and they had never been asked before”

Project lead, Newham COPD

Shine project ‘I probably… haven’t involved patients as much as I thought in the past … haven’t made them as aware of all the different options.’

GP, North Shields

MAGIC programme

Benefits to patients

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More confidence for better day-to-day management of health

Able to make and sustain healthy lifestyle changes

Higher satisfaction with care experience

Better adherence to treatment plans and correct medicine use

Shared decision

aids


Goal setting and

action planning

Peer support

Patient group

education

Next steps for implementation

68

Evaluating improvement interventions

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Key evaluation question:

Did the improvement intervention fulfil its

intended objectives?

Sub-questions:

How was this achieved?

What resources did it take?

What unintended results were there?

Evaluation approaches

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Summative

• Summarises the intervention effect at the end

Formative

• Findings shared and help to shape the intervention

Rapid cycle

• Frequent review of effectiveness of intervention

Developmental

• Intervention is still developing, all aspects reviewed and changes made in response

External evaluation

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Often part of large scale, national or multi-site change

programmes

Independently commissioned from specialist teams

Great learning opportunity (NOT a threat!)

Share experience - the good and the challenging

More at: http://www.health.org.uk/publication/evaluation

-what-consider

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http://www.health.org.uk/publication/evaluation-what-consider





Quick guides

73

Designed to get you

started

Sign post to other

resources

A way to introduce

new topics to patients,

staff, board members

Helping to build the evidence base

74

Better reporting of improvement work will:

Help spread successful improvement interventions

Prevent wasted effort on repeating interventions

that don’t work

Sharing and learning more

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Reports on improvement work need not only results but also:

how the initiative was designed

the setting where it was implemented

detail on the core components

measures and data used to measure the change

challenges overcome along the way

how they were overcome

what the team would do differently in the future

Reporting bias

76

When reporting a successful intervention many improvement reports amount to:

“See, we did X!” versus “Here’s what we had to do to

achieve X”

Higher tendency to write up reports and submit papers and

abstracts when the improvement is ‘successful’

We can a lot from what didn’t work

https://medivizor.com/blog/2014/12/18/8-tips-gaining-access-to-journal-articles/

Points to consider:

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When do you start ‘writing up’?

How to capture the key

components of the improvement

initiative?

When barriers arise - how do you record these - and the action to overcome

them?

Some tips for writing up

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Writing always takes longer than you

think – don’t leave it to the last few weeks

Robust data collection from the outset is

vital

Keep an ‘improvement diary’ to help

capture information as you go along,

particularly the adjustments

Involve others

79

Include different perspectives in your write up;

not just the improvement lead

other staff involved

staff not involved but affected by the change

service users

Reporting guidelines – a useful tool

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SQUIRE guidelines

Standards for Quality Improvement Reporting Excellence

Checklist of points to consider when writing up improvement work

• Don’t leave it until you’ve completed the work

• Use guidelines to consider what data to capture as you go along

Download SQUIRE guidelines from:

http://www.squire-statement.org/




Consider the audience and where to publish

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Core information remains but different emphasis for:

A report to the funder

Academic publication in a peer reviewed journal

Publication in a professional practice magazine

Beyond text:

Photos, videos, animations - bring the work to life

Spreading the word

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Professionals listen to their peers

Think of a range of approaches - and use every opportunity:

Professional seminars

Conferences

E-mail bulletins and newsletters

Blogs

Twitter

Communicating your work

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Key concepts for spreading

ideas

Using comms approaches:

• planning your strategy

• engaging the right people

• sustaining interest

• celebrating and sharing

achievements

Resources to support improvement

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For more information see: personcentredcare.health.org.uk

85

Web account

Keep in touch

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Visit our website at www.health.org.uk

Subscribe to our monthly email newsletter at

www.health.org.uk/newsletter

Register for email alerts to be notified about our latest

work at www.health.org.uk/updates

Take part in conversation and debate about current

healthcare issues on our blog

Follow us on Twitter, Facebook or LinkedIn.

For all the latest news and developments

from the Health Foundation:

http://www.health.org.uk

http://www.health.org.uk/newsletter

http://www.health.org.uk/updates

Learning Needs Analysis

Group Work by Renal Teams

Richard Fluck

UK Renal Registry

11.30-12.00

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We would like your Renal team to tell us what learning support you would like in the following areas which you will recognise from the e-survey

Station 1: Engaging people

Station 2: Working as a team and supporting each other

Station 3: Co-production

Station 4: Designing improvement and managing change

Station 5: Evaluating your work and sharing success

Station 6: Maintaining and spreading improvement

Station 7: Improvement tools and techniques

Station 8: Important people for the work

Station 9: Challenges / barriers to success

Station 10: Coffee/Tea Station and Think Kidneys Website

Learning Needs Analysis – group work instructions



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• In your team start at one of the posters (the order of which your unit starts at is detailed in the instructions on your table)

• One hour is allocated for this task in which you will move round systematically from one station to the next. You will hear a “move to the next station” sound when you will move to the next station to to identify your learning needs as a team

• As you arrive at a station, locate your renal team name on the poster and provide notes and comments about the skills that are already available in the team and the additional support your renal team will need in this area


Learning Needs Analysis – group work Instructions

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• You will also visit station 10 which will demonstrate the TP-CKD programme website and provide you with a much needed coffee or tea!

• As part of this task you will need to prepare your renal team’s ‘one key learning requirement’ and we will ask for this to be fed back to the wider group

• You will also find a summary of the Learning Needs identified by the pre-event survey in the instructions for your renal team. This identifies the skills you already have as a team as well as development needs


Learning Needs Analysis – group work Instructions



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• Please start at the station allocated below and work round in number ascending order

• Coventry Station 1 • Heartlands, Birmingham Station 2 • Northern General, Sheffield Station 3 • St Luke’s, Bradford Station 4 • Nottingham Station 5 • Newcastle Station 6 • Kings, London Station 7 • Plymouth Station 8 • Derby Station 9 • Imperial, West London Station 10


Learning Needs Analysis – station templates


Learning Needs Analysis

Feedback from Group Work

Richard Fluck

NHS England

13.05-13.20

LUNCH

13.20-14.05

The mission for today

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How are you going to introduce patient activation measures (PAM) and Clinician support for PAM measures (CSPAM), patient reported outcome measures (PROM) and patient reported experience measures (PREM) into routine use within your departments?


Renal Team Plans

30-60-90 Day Group Work by

Renal Teams

Karen Thomas

UK Renal Registry

14.00-15.45

Renal Team Plans 30-60-90 Day group work instructions

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In your Renal team you have 2h 15m to discuss and agree what you would like

to achieve for your team from implementing the TP-CKD programme

To give you time to gather initial ideas, share with your partner team and make

any adjustments, the session is divided into sections

14:00 to 14:50 - renal teams discuss and agree their implementation plan (30,

60, 90 day plan) and complete the template provided

14:50 to 15:30 - buddy up with partner renal unit to start peer assist

15:30 to 15:45 - revise your plan following feedback

15:45 to 16:15 - decide on 1 key message from your plan to share with the

everyone


Within… We want to achieve… We will achieve this by…

30 Days

Engage about PAM, CSPAM & PROM Who? By whom? How?

60 days

Pilot PAM, CSPAM & PROM Who? By whom? How?

90 days

Roll out routine use of PAM, CSPAM and PROM Who? By whom? How?

Example 30-60-90 Day Plan Renal Team Name:_____________________________________________________

Within… We want to achieve… We will achieve this by…

30 Days

60 days

90 days

30-60-90 Day Plan Template Renal Team Name:____________________________________________________

Renal Team Pairings


30-60-90 Day Cycle

Feedback from Group work

Richard Fluck

NHS England

15.45-16.15

Next Steps

Richard Fluck

NHS England

16.15-16.30

Richard Fluck National Clinical Director for Renal NHS England [email protected]

Jonathon Hope TP-CKD Patient Co-Chair [email protected]

Patricia Muramatsu Senior Strategic Advisor Person Centred Care Team, NHS England [email protected]

How to find out more Karen Thomas Head of Programmes UK Renal Registry [email protected]

Sarah Evans TP-CKD Programme Coordinator UK Renal Registry [email protected] Rachel Gair Person Centred Care Facilitator UK Renal Registry [email protected] Ron Cullen CEO UK Renal Registry [email protected]

Contact Think Kidneys

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kidneyswww.twitter.com/ThinkKidneys

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thinkkidneys.nhs.uk


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Health & Medicine

Valuing Individuals – Transforming Participation in Chronic Kidney Disease