TP-CKD Learning event

Valuing Individuals – Transforming Participation in Chronic Kidney Disease

Cohort 2 Learning and Sharing Event

08 November 2016

Welcome and Housekeeping

Welcome and Housekeeping

| 3Transforming Participation in CKD | Cohort 2 Event | 08 November 2016

Programme for the Day

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11:00- Welcome and Housekeeping - Aims of the Day and overview of programme to date

11:25 Ice Breaker

11:35- PAM / PROM / CS-PAM Data- Cohort 1 Presentations and Experiences- Q&A Session

13:15 Lunch Break

13:45 - The Importance of Communication

14:05- Quality Improvement and Change management- The importance of starting small

14:35 - Group Work – Your Health Survey- 30-60-90 Day Plans- Feedback of Implementation Plan

15:50 - Next Steps and Close

Transforming Participation in CKD | Cohort 2 Event | 08 November 2016

Overview of TP-CKD programme to date

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

Context for TP-CKD Programme


We know that…………..

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• People who have the knowledge skills and confidence to be involved in their health care have:

• Better health outcomes

• Improved quality of life

• Increased independence and control (decision making, informed choice, better support)

• Increased knowledge and understanding

• Understanding the impact of CKD on the other 95% of life – not just when in clinic

Source: Coalition for Collaborative Care. Personalised care and support planning handbook. NHS England 2015


Many of the behaviours we are asking of people (staff and patients) are only realised by those with greater levels of knowledge, skills and confidence ( highly activated)

When we focus on the more complex and difficult behaviours– we discourage those who have less skills, knowledge and confidence

If we start with behaviours more feasible for staff and patients to take on - it increases individual’s opportunity to experience success

Why person centred care?


The Passive Patient

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• Healthcare can be profoundly disempowering

• But most patients want to be treated as active participants – as co-producers of health


To a person centred approach….


A developmental scale


What are the questions the TP – CKD programme is asking?

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Can ‘person centred care’ measures be collected routinely within renal units?

What level of knowledge, skills and confidence do people with CKD have to manage their own health care – This is known as Patient ActivationDoes somebody who is activated have better QOL outcomes and clinical outcomesCan we improve a persons knowledge, skills and confidence with targeted interventions

Co-Production underpinning the whole programme


Knowledge, skills and Confidence Cube


Patient Activation Measure (PAM) – 13 questions to assess a person’s knowledge, skills and confidence in managing their own health and healthcare.

Patient Reported Outcome Measure (PROM) – What is really important to you as a person with CKD5 questions to assess a person’s overall health. E.g. problems performing usual activities, self-rating their health by assessing between 0 (worst imaginable health state) and 100 (best imaginable health state)

11 questions on how bothered you might be by the most common symptoms renal patients experience.

CS-PAM –To assess how supportive HCP are to patients gaining knowledge, skills and confidence to self manage

Phase 1 – Measurement with cohort 1


Lessons Learned

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• Involve patients from the beginning – working group

• Clinical champion – patient champion

• Start small and build – QI cycles

• Engagement of whole team

• Leadership

• Different ways of working – volunteers – IT - process


What next……………..Phase 2 Cohort 1

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Use data to understand where you are as a team

Use it to begin to change behaviours and conversations

HOW?

We will facilitate workshops + introduce interventions


What next……………..Phase 1 Cohort 2

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Implementation plan – 30-60-90 day

Develop implementation working group

Engage with larger team in unit

Start measurement in January 2017 – small cycles


Icebreaker

Ice breaker – “I bet you’ve never…?”

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Think about something you have done or experienced that no one in the room knows or would guess about you.

When everyone has one, share them on your table and select the most interesting, unlikely or bizarre, and we’ll share them.

The aim is to move beyond the value judgements we sometimes make without thinking, and start the day as equals bringing different qualities and experience to the event.


Data and Cohort 1 Experiences

• Key aim of TP-CKD: empower patients to take greater control of their health and wellbeing - leading to better outcomes

• Clinical teams also have a key role in patient activation, but they are variable in their level of support for patient activation: CS-PAM

Aim of TP-CKD


• Aim of CS-PAM: understanding staff attitudes and beliefs to person centred care within each renal centre with the intention that once fed back acts as a catalyst for change

• Ten renal centres submitted data as part of cohort 1, with 358 staff members completing the survey

CS-PAM


CS-PAM: clinical staff demographic results

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Staff Number % Staff Number %Number of staff 287 Gender Male 60 20.9Staff type Female 200 69.7Doctor 50 17.4 Missing 27 9.4Nurse 148 51.6 Ethnicity AHP 45 15.7 White 182 63.4Other 27 9.4 Black 9 3.1Missing 17 5.9 Asian 49 17.1Age group (years) Other 12 4.2<=24 5 1.7 Not applicable 4 1.425-34 46 16.0 Missing 31 10.835-44 96 33.4 Regularly work with 45-54 88 30.7 long term conditions 55+ 25 8.8 Yes 255 88.9Missing 27 9.4 No 5 1.7Years in practice Sometimes 10 3.50-5 26 9.1 Missing 17 5.96-10 42 14.6 Clinical setting 11-15 41 14.3 Within acute hospital setting 199 69.316-20 38 13.2 Outside hospital setting 36 12.521-30 70 24.4 Other 18 6.330+ 22 7.7 Missing 34 11.8Missing 48 16.7

CS-PAM: Percentage of staff per activation level


CS-PAM: Activation level by staff type and age group


CS-PAM: Activation level by clinical experience & gender


CS-PAM: Renal centre and staff activation level (%)


• 30% of staff highly activated

• Wide range of individual CS-PAM scores: 22.6-90.6

• The variability in support for patient activation also reported in other studies

• The mean activation score of 72.0 (range 22.6-90.6, median=71.6) was similar to results in the NHS England CS-PAM report, indicating that clinical support for patient activation has not changed substantially over the last 6 years

CS-PAM: Summary findings


• There was evidence of a significant difference in the support for patient activation between genders and staff type: female staff were more activated than males, nurses and AHP were more activated than doctors

• There was no significant difference found between activation and age and years’ clinical experience

• Independent actions and judgements by patients were supported to a lesser degree by staff

• Least supported was patients seeking information independently

CS-PAM: Summary findings - continued


PAM and PROM

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The TP-CKD measurement work stream developed a tool known as ‘Your Health Survey’ using previously validated surveys:•5 questions on overall health (EQ-5D-5L) •17 questions on symptoms (iPOS-S renal)•13 questions on the ability of the patient to manage their health (Patient Activation Measure (PAM)) The PAM is calculated as a score which corresponds to a PAM level


PAM levels explained

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PAM level 1: Disengaged and overwhelmed. Individuals passive & lack self-confidence, knowledge low, goal-orientation weak, adherence low.

PAM level 2: Becoming aware but still struggling. Have some knowledge but large gaps remain, believe health is largely out of their control

PAM level 3: Taking action. Individuals have key facts, are developing self-management skills and are goal orientated. PAM level 4: Maintaining behaviours, adopting new behaviours but may struggle in times of stress and change. Maintain a healthy lifestyle.


PAM/PROM patient demographics

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Patient demographics Number Percentage

Assistance with survey completion Own 619 58.8Staff 219 20.8Friend/relative 160 15.2Unknown 55 5.2All 1,053 100.0Completion of survey At home 255 24.2Renal unit 643 61.1Clinic 107 10.2Unknown 48 4.6All 1,053 100.0Age distribution 18 to 24 27 2.6

25 to 34 56 5.3

35 to 44 80 7.6

45 to 54 162 15.4

55 to 64 217 20.7

65 to 74 234 22.3

75+ 274 26.1Unknown 3 0.3All 1,053 100.0

PAM level


Patient activation by renal centre


PAM questions


Patient symptoms

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Prevalence of patient symptoms determined as the proportion of patients with moderate,

severe or overwhelming symptoms, with the 5 most prevalent symptoms:

•58% of those surveyed experienced weakness and lack of energy

•49% of patients surveyed reported having poor mobility

•39% of those surveyed experienced pain

•38% of those surveyed reported difficulty in sleeping

•36% of those surveyed experienced shortness of breath


Patient symptoms by age group


Overall health


Summary findings PAM/PROM

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• Many people living with CKD completed the survey, more than half doing it themselves, without needing help from others. This is a promising starting point for using the survey on a wider scale.

• One in three patients reported to feel overwhelmed by their illness, and preferred that their doctor to make the decisions about their health.

• At the same time, a similar proportion said that they had the knowledge,

skills and confidence to be part of their health care team.


Summary findings PAM/PROM - continued

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• Many participants felt they lacked the confidence to work out solutions when new health problems would arise, and did not feel able to maintain lifestyle changes.

• More than half of all people who completed the questionnaire reported to be bothered by lack of energy.

• Poor mobility, pain and difficulty sleeping were also very common.

• Half of all participants had at least moderate problems with mobility and with carrying out their daily activities.


Lessons learned from cohort 1

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• Response rates for CS-PAM were low: varied from 3% to 30%, overall response rate of 14.3% for all staff

• Respondents completing the survey are self-selective: don’t know if respondents are representative of the staff/patients in each renal centre and staff in the wider kidney community

• CS-PAM: big differences in response rates between renal centres

• There is likely biases: possibly be more towards respondents that are activated and staff that support person centred care completing survey


Lessons learned from cohort 1 - continued

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• Feedback of CS-PAM results to individual staff members severely hampered by staff not providing identifiers

• Due to low numbers of staff participating in some renal centres, detailed centre level reports only possible in 2 centres (CS-PAM)

• The problem with small numbers:•Could result in the identification of respondents•Limits generalisability of survey results at centre level

• An increase in the number of respondents at centre level is needed to report meaningful statistics back to centres and for results to useful in affecting clinical change


Lessons learned from cohort 1 – small numbers

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Demographic characteristicsCentre X Centre X + 6

Number % Number %

All staff 14 20

Age group (years)

<=24 1 7.1

25-34 3 21.4

35-44 4 28.6

45-54 4 28.6

55+ 1 7.1

Missing 1 7.1

PAM level

High 4 28.6 8 40.0

Low 6 42.9 6 30.0

Medium 4 28.6 6 30.0


Conclusion

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• It is possible to routinely gather clinician support for patient activation as well as a patient’s level of knowledge, skill and confidence, quality of life and experience of healthcare using data collection methods

• Thanks you for listening


TP-CKD Cohort 1 Experiences

BradfordPresented by Dr Ramla Mumtaz ,Clinical Staff Lead & Peter Forrest ,Patient Lead

Bradford’s identified pilot survey patient group was “Haemodialysis patients”. Surveys completed in January-February 2016.

Bradford Project Strengths ; A. Successful 50: 50 partnership (Patient and Staff managing project) - 3-4 monthly progress

review meetings B. Local press release, media coverage and utilization of Trust wide available resources. C. Targeted use of staff and patient group meetings. D. Timely discussions of challenges and progress reports. Challenges faced and dealt by Team Bradford ; A. Non-engagement (Analysis done ,barriers identified both for staff and patients) B. IT , Admin and Clinical support Co- ordination ( support identified and co ordinated) C. Staff and Patient Coaching initiatives ( coaching session planed, first one by RR on 25/11) D. Sustainability ( to discuss after CQUIN Completion)

Implementation


Pilot data returns from Renal Registry for 148 patients , transferred to BHLY (vital data)

Available to use during clinical interactions. Patient informed of their activation level during consultations.

Staff acknowledging it in care plans and are trying to agree shared goals based on

activation level ranging from low to high , 1-4. Local pilot data provided by Renal Registry was analysed by Trust C QUIN team to

take up - C QUIN scheme offered by NHS England.

Data Handling


CQUIN ; Activation System for Patients with Long Term Conditions Scheme Name: GE2: Activation System for Patients with Long Term Conditions (LTCs)

Duration ; April 2016 to March 2018,

Focus Group ; Pre- Dialysis, Failing Transplant ,CKD4- 5 Patients

Target Number ; 500 patients.

Our Next Step( in progress)



Newcastle

Presented by Helen Ritson (Young Adult Kidney Care Co-ordinator)

and Rachel Fraser (Renal Pharmacist)

• Education of staff

• Intimidating ? Too much extra work

• Finding someone to take ownership

• Timing of conference calls

• Frequency of repetition

Challenges


• Learning and sharing events

• 30-60-90 plan

• Patient support

• Rachel Gair

• Feedback from Sarah about progress

Help & Support


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Young Adult Patient Group

• 58 patients

• Aged 18-30

• Young adults publicised via closed groups on Facebook, Twitter and Instagram to raise awareness

• Surveys given to face-to-face or via post

• Response rate:

• Almost 100% face-to-face (1 patient refused)

• 14/18 post


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Transplant Patient Group

• > 730 patients

• Posters and leaflets in clinic

• Repatriation project

• Surveys given at outpatient clinic visit

• 20 patients each week

• Response rate good


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Next Steps

• Intend to repeat after 6 months

• Practicalities

• Roll out to other patient groups

• Using experience from Young Adult/Transplant groups


• Good response rate to PREM

• MDT task and finish group

• Involvement from TKPA volunteers

• Commitment from all staff (whole unit involvement)

PREM


Thank you



DerbyPresented by Peter Naish & Joanna McKinnell

> Developing an implementation working group – How you did it, who it consists of and how you use reflection at end of each meeting. The importance of the clinical/patient champion role.> Development of a patient video>How you engage the wider team and keep the momentum going

Development of Working Group

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• Dissemination across whole workforce by key members with TP-CKD group

• Verbal and email reminders

• Received results in private and confidential envelopes individually named

• Handed out in person and offered the opportunity to discuss the results

• Surprise, competition, debate around questions, discussion over meaning

• Delay in incorporating into appraisal multi factorial

CS-PAM


• Low clearance clinic, real time

• Then rolled out to PD

• Spread sheet useful especially for pd population, allowed targeted

intervention in groups flagged up highly in depression / anxiety based

questions

• Concern over more widespread use before using patient view feature properly

• Communication to patients of their results and what we are doing with them

• Very successful group, clear and united vision...... culture change

• Patient video example.

Small Cycles of Change – The Process



Kings College HospitalPresented by Eleri Wood & Agnes Gogognon

Getting Started

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Challenges to implementing survey How did we overcome them?

Competing demands = lead only able to give relatively small amount of time/resources •Everyone else having same problem, but being less invested, and geographically separate•Fall off of patient and clinical volunteers who came to initial event• Difficulty engaging lots of patient volunteers in absence of active KPA

Patient reluctance to complete the form•Competing with other PREM/PROMs.•Disconnect between completing the survey and getting results / changing management

• Start small• Aim to establish practice in areas

where similar data already collected before spreading

• Patient volunteer meeting clinicians

• Patient volunteer engaging with and assisting patients

• Replacing or aligning with other measures

• Using posters, leaflets


What is the role of patient volunteer?Introducing the survey to patients, encouraging, assisting to complete, informal peer support and signposting, provided positive role model.Advocating for the programme to cliniciansMotivating clinician leads

How does this work and what lessons can be shared?Initially volunteer and clinician working togetherShort frequent visits and contactOver time volunteer familiar to nurses and patients in the area

We plan to repeat this in each clinical area to engage the wider team and gain the spread

Role of Patient Volunteer


Q&A SessionAny questions?

LUNCH13:15 – 13:45

The importance of communication for TP-CKD

Annie Taylor

“You cannot not communicate”

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www.thinkkidneys.nhs.uk/ckdTransforming Participation in CKD | Cohort 2 Event | 08 November 2016

“You cannot not communicate”


1. Your team and Trust2. Your patients 3. The TP-CKD team

Communication – who?


Why?

To help people understand To increase involvement and engagement To raise awareness and the profile of your work

1. Your team and Trust


Why?

To help them understand why you’re doing this work

To increase involvement and engagement To encourage to take part To influence others To make change and improvement happen

2. Your patients


Why?

To help and support you To increase awareness of the programme and

your part in it To encourage others to take part To showcase this work to the NHS and beyond

3. The TP-CKD team


Plan how you are going to do it Talk to people Create your messages and get them out Provide regular updates and feedback to people Use the resources you have Get help if you need it

How to communicate…..


Communication…

Make use of resources available – poster, leaflet, guidance, connections, people,

Find people who will help you with this – someone from your team, your Trust comms team, me (!)

Important message from C1 – “involve and engage with everyone – the better the comms the better it all works”

Essential element of comms - feedback to everyone involved

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Keep a focus on communication – your success depends on it…..


Annie Taylor

E [email protected] 07793 608286


mailto:[email protected]

Change Model for the Programme

Ron Cullen

• Peer Assist from experts helps you refine your plans and your overall strategy

• After Action Review – Helps you make the small adjustments as you go along

• Peer Review helps us all reflect and capture the learning

• Underpin it all with measurement and and co-production to keep it real and inform decisions

A Simple Model of Change and Sharing


• Have a clear idea of what you want to achieve

• Develop a set of plans that describe what you are going to do and how you will do it

• Identify a peer assist team that will be able to challenge your plans. This could include

• People who have already done it

• People with expertise from inside or outside your organisation• IT, etc COMMS, Project Management

Peer Assist


• Conduct the session

• Identify a facilitator – role is to keep the workshop open and challenging avoiding defensiveness and encouraging learning

• Identify a scribe

• Team present their initial plans

• Correct change plans as you go

• Come out with a finalised plan

• Run for no longer than 2 hours

Peer Assist


After Action ReviewLearning, doing, testing, checking,

learning some more….

• Learning whilst doing: don’t wait until the end of the project• A simple process for continuous improvement: learn quickly

and adapt in order to improve• Introducing the discipline of reflection and learning• Team building: opportunity for sharing of insights, strengths

and weaknesses of event as equals. Team learning & building trust.

Why do it?


When do you hold a AAR?

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• Events suitable for AARs have a beginning and end, a purpose and some metrics on which performance can be measured.

• After the initial pilot – hold one straight after a clinic where health surveys were handed out

• After a working group meeting• After each 30-60-90 days of implementation plan• You can decide how often!


Hold the AAR immediately

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• Participants still available• Memories fresh• Learning can be applied straight away, even on the next day• Enables build up of knowledge


Create the right climate

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• Everyone in the event participates on an equal footing• Completely free to challenge and comment on actions• Climate of openness and commitment to learning – they are

not critiques or personal performance evaluation• No spectators or management oversight but sometimes

might require a facilitator


How do AARs work?

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• It is a pencil and paper or flip chart exercise• Take no more than 20 minutes• Open and honest meeting• Answers 4 questions:

• What was supposed to happen?• What actually happened?• Why were there differences?• What can we learn from that?


A personal AAR

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• Take a few moments and reflect on something that happened yesterday – imagine it – remember what you said and how you feel

• Now answer the 4 AAR questions• What was supposed to happen?

• What actually happened?• Why were there differences?• What can you learn from this?

Just imagine what a team can achieve with a similar reflection


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What were the objectives of the activity?•All share understanding of what was supposed to happen•It does require a clear, well communicated and unambiguous objective and plan.•Everyone write down on a piece of paper and feedback to group or capture on flip chart.

What was supposed to happen


What actually happened – the ground truth

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• Vital part of process – don’t rush it• Identify problem not culprit• Establish the facts and encourage personal disclosure – can

‘unblock’ the process• Challenge people if they start moving on to opinions


Compare plan with reality

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Why were there differences and what can we learn?•Successes and shortfalls discussed•Action plans put in place to sustain successes and improve shortfalls•People learn from differences in perspectives•May need to repeat the question – why was this? To get to underlying reasons


Recording an AAR

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• Generate summaries of learning points• Primarily learning for the team• Basis for a broader learning programme – ‘is there anyone

else with whom we could share what we’ve learned’• Capture a record of key learning points and agreed actions &

then refer to as a reminder at beginning of next activity.


Role of the Person Centred Care Facilitator

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• Monthly calls with TP-CKD lead • Attend working group meetings• Support teams with resources and information• Capture learning – ‘what have been challenges and what has

worked’


Peer Review

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• This mirrors the peer assist event but pulls together the learning

• Identify key results and learning points and present them

• Identify a group that includes

• Stakeholders you may wish to engage and spread

• Experts who can challenge

• People who can commit resources to continue

• Capture the overall learning on a series of agreed templates to share

• Plan for the next phase


Measurement

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• We measure for many reasons

• Judgement e.g. UKRR reports – Test against standards mainly outcomes some process

• Research – To prove a change in practice has improved before and after measurement usually outcomes

• Improvement – Need rapid feedback mainly measure processes and feedback rapidly

• Remember to be clear what you are trying to achieve

• Design measures to measure this

• Remember to put in balancing measures eg increased time


How does this link with AAR

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Mea

sure

Time

AAR


Group Work30-60-90 Day Plans

Implementation Plan

30-60-90 Day Plan Instructions

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We would like to see you develop a 30-60-90 day plan based on a Quality Improvement approach – starting with small cycles of change and spreading.

Please use the learning shared from cohort 1 to develop these plans

You will find examples of the 30-60-90 day plans from Cohort 1 on your table to offer ideas. Please also see the After Action Learning tools.


Example of a 30-60-90 Day Plan

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

30 Days Engage about PAM, CSPAM & PROMWho?By whom?How?

60 days Pilot PAM, CSPAM & PROMWho?By whom?How?

90 days Roll out routine use of PAM, CSPAM and PROMWho?By whom?How?


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

30 Days

60 days

90 days

30-60-90 Day Plan Template


Feedback of Implementation Plan

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We would like each renal unit team to share 5 minutes feedback at the end of the session covering the following:

•What group of patients do you propose starting with?

•What do you see as challenges?

•How will these be overcome?

•What do you have in place that you can develop further – links with KPA, patient + clinical champion, working group etc.

•What support would you like from TP-CKD team?

•What’s your key message to take back to your team following this event?


Richard FluckNephrologist, Derby and Co-Chair of TP-CKD [email protected]

Jonathon HopeTP-CKD Patient [email protected]

How to find out more

Karen ThomasHead of ProgrammesUK Renal [email protected]

Sarah EvansTP-CKD Programme CoordinatorUK Renal [email protected]

Rachel GairPerson Centred Care FacilitatorUK Renal [email protected]

Ron CullenCEOUK Renal [email protected]

Contact Think Kidneys

www.linkedin.com/company/think-kidneyswww.twitter.com/ThinkKidneyswww.facebook.com/thinkkidneys

www.youtube.com/user/thinkkidneys

www.slideshare.net/ThinkKidneys

www.thinkkidneys.nhs.uk/CKD








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