1. Valuing Individuals – Transforming
Participation in Chronic Kidney Disease
Peer Review Event
10 May 2016

2. Welcome and Housekeeping
Richard Fluck
Nephrologist, Derby and Co-Chair of TP-CKD
Programme

3. Welcome and Housekeeping
Transforming Participation in CKD Programme Peer Review Event 10th
May 2016 | 3

4. Programme for the Day
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09:30 Registration opens and tea/coffee and snack available
10:00 Welcome and housekeeping
10:05 Programme Update and Purpose of Day
10:25 Renal Unit Mixed Group Peer Support Session
11:25 Tea & Coffee
11:35 Renal Unit Group Work
12:05 Feedback from Group Work
12:55 Lunch Break
13:30 Programme Updates
- Data Feedback
- PV and SONAR Update
- Intervention Workstream update
- Q&A Session
14:40 Specialist patient / professional session
15:20 Tea / Coffee break
15:30 What advice would we give to Cohort 2
16:00 Close
Transforming Participation in CKD Programme Peer Review Event 10th
May 2016

5. Programme Update &
Purpose of Day
Rachel Gair
Person Centred Care Facilitator,
UK Renal Registry

6. 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.

7. To a person centred approach…
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8. Co-producing health
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9. What are the questions the TP – CKD programme is asking?
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Can:
Patient Activation Measure (PAM)
Patient Reported Outcome Measure (PROM)
Patient Reported Experience Measure (PREM)
Clinical Support – Patient Activation Measure (CS-PAM)
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 and teams activation?
Co-production as a core value

10. Measurement Workstream Update
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Patient Activation Measure – PAM
Assesses an individual’s knowledge, skill, and confidence for managing one’s health
and healthcare.
People who measure high on this assessment typically understand the importance of
taking a pro-active role in managing their health and have the skills and confidence
to do so.
Patient Reported Outcome Measure - PROM
Two validated PROM’s chosen:
CKD specific: Looking at different symptoms known to be found in patients with CKD
A generic survey looking at the overall health of the individual and the impact CKD has
on this

11. Measurement Workstream Update
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Patient Reported Experience Measure - PREM
A patient's experience provides valuable insight. Understanding a patient's
experience when he or she receives health care is integral to improving patient-
centred care.
As a suitable validated tool for this could not be found it was decided to design a new
one which encompassed all aspects that patients wanted measuring. For this reason
the new Renal PREM has been designed by the Measurement Workstream but in
collaboration with the BKPA and NKF so that it was designed predominantly by
patients.
As this is will be used annually by all Renal Units it is hoped that it will soon become a
validated tool.

12. Intervention Workstream Update
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The Interventions Development Team
- A working party of patients and health professionals set up to source and create a toolkit
comprising Intervention Programmes to improve the skills, knowledge and confidence of patients
with kidney disease (Stage 3b or higher)
Objectives
- The group was tasked with identifying interventions helpful for health professionals as well as
patients
- Likelihood of achieving full involvement of patients in their own care is dependent on both their
own level of activation and the level of activation of their health care team
Work to date
- Team sourced an outline of interventions
- Narrowed these down to a specific group
- Prepared a draft Intervention toolkit

13. Communications Sub Group – Update and Strategy
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Vision
To develop an inclusive and practical communication strategy to deliver awareness
of, and support to, the programme team and everyone involved.
Definition of stakeholders and the targeted audience
TP-CKD branding options
Communication methods
- Social media
- External /internal involvement
- Patient and staff information
Transforming Participation in CKD Programme Peer Review Event 10th
May 2016

14. Communications Sub Group – Update and Strategy
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What we have achieved
•Stakeholder analysis
•Brand identity
•Website under the umbrella of Think Kidneys
•Patient information leaflets/ posters
•Staff information / renal unit guidance
•Monthly newsletter
•Monthly teleconferences/meetings
•Patient stories
•Blogs
•Communications support to workstreams
•Media planning
Transforming Participation in CKD Programme Peer Review Event 10th
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15. Commissioning Workstream - Update
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• To establish ways to embed the learning from the Programme into commissioning plans.
• Commissioning should encourage the adoption of evidence based medicine and best practice
• Think Kidneys
• Improving experience
• Improving outcome
• How do we incentivise or mandate behaviour change?
• Contract terms and conditions
• CQUINs
• Service Specifications
• Quality Standards
• Outcome measures / Dashboards
• The work stream will develop contract “products” that reflect the learning and draw directly from
patient and carer views and involvement

16. Survey Returns
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Unit
PAM
Returns
CS-PAM
Returns
Birmingham Heartlands Hospital (Heart of England NHS Foundation
Trust)
37 28
St Luke’s Hospital (Bradford Teaching Hospitals NHS Foundation Trust) 180 (HD) 61
Coventry (University Hospitals Coventry & Warwickshire NHS Trust) 22 (HD) 14
Derby (Derby Teaching Hospitals NHS Foundation Trust) 96 (OPD/PD) 76
Hammersmith Hospital (Imperial College Hospital NHS Trust) 61 (HD) 6
King’s London (King’s College Hospital NHS Trust) 6 (HD) 31
Freeman Hospital (Newcastle Upon Tyne Hospitals NHS Foundation
Trust)
0 19
City Hospital ( Nottingham University Hospitals NHS Trust) 18 (OPD) 16
Derriford Hospital ( Plymouth Hospitals NHS Trust) 8 (OPD) 54
Northern General Hospital (Sheffield Teaching Hospitals NHS Foundation
Trust)
39 (HD) 19
TOTALS 467 324

17. Purpose of the Day
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• This going to be hard work!
• To share experiences
• Ask questions – find out what works
• Challenge beliefs and practices
• Inform and change practice on return to units
• Develop partnership working even further – co-production
• Inform cohort 2
• Capture learning

18. What next…
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• Data feedback – start changing the conversation
• Launch Interventions
• Cohort 2
• Continue to share learning with other LTC + NHS England
• Commissioning + Contracting for Person Centred Care
• Health Economics

19. Renal Unit Mixed Group Peer Support
Session
10:25 – 11:25

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Peer Support Session – Instructions
Transforming Participation in CKD Programme Peer Review Event 10th
May 2016
PURPOSE: Build on the concept of ‘buddy units’ and gain as much learning and sharing of experiences from across all
teams by mixing them up. A facilitator will be allocated to each table
Ice – breaker: . This will involve each person in turn in the team asking the person next to them ‘I bet you have never’
and then recount something revealing that they as an individual have done. The aim of this is to move beyond the value
judgements that we sometimes make without thinking and start the day as equals bringing different qualities to the event.
In the first half of the session the facilitator will encourage sharing and engagement of all individuals involved making sure
that there is full interaction and all voices heard. This will be unstructured and about engagement and confidence building.
This section will last about 20 minutes including the ice breaker.
Post it notes will be available on tables to encourage note taking on points to take back to unit teams.
The second part of the session will be more focused on challenges and solutions that have been experienced by the
teams.
•Did you feel involved in the process of measurement after attending the event in November – how were you involved
( group meetings, emails etc)
•Have there been any barriers to starting surveys or spreading surveys to wider population in unit
•What have been responses of fellow patients and colleagues to the programme – has there been good support?
•What are views on Renal Unit Package and timings (posters, leaflets, RUG etc) and are there any changes you would
suggest

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Peer Support Session – Groups
Transforming Participation in CKD Programme Peer Review Event 10th
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22. Renal Unit Team
11:35 – 12:05 Group Work
12:05 – 12:55 Feedback

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Renal Unit Group Work – Instructions
Transforming Participation in CKD Programme Peer Review Event 10th
May 2016
11:35 – 12:05 Renal Unit Group Work
Individual teams to use ‘pre-work’ as a resource for discussion.
Individuals to bring back to the team any learning that may have been gleaned from previous sessions – any
solutions or offers of help.
Returning to your own Renal Teams we would like you to bring together the ‘Pre Work’ (as per below) and
your learning from the previous Mixed Group session to draw out the key points and set some next steps
that your unit teams can take away with you.
•The 5 challenges + 5 successes we have had in implementing the Health Surveys
•The 2 pieces of overwhelming advice we would offer to team in cohort 2 ( feedback in last session)
•The impact co-production has had and how we feel we are doing things differently
•How we think this will change outcomes for patients
Please use the template provided to capture your learning and next steps in preparation for feedback. A
facilitator will be available to support and guide this session.

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Renal Unit Group Work – Instructions
Transforming Participation in CKD Programme Peer Review Event 10th
May 2016
12:05 – 12:55 – Feedback
You will have 5 minutes to feedback to everyone your teams’ next steps and key learning points. Nominate
one person from your team to - a roving mic will go around the tables giving each unit an opportunity to
share.

25. LUNCH
12:55 – 13:30

26. Programme Updates and Data
- Data Feedback
- PV and SONAR Update
- Intervention Workstream Update
13:30 – 14:40

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Data Feedback
Transforming Participation in CKD Programme Peer Review Event 10th
May 2016

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Intervention Workstream Update
Transforming Participation in CKD Programme Peer Review Event 10th
May 2016
UK Renal Registry have worked in setting up a group consortium to develop a programme – Transforming
Participation in CKD.
The Interventions Development Team
•A working party of patients and health professionals set up to source and create a toolkit comprising
Intervention Programmes to improve the skills, knowledge and confidence of patients with kidney disease
(Stage 3b or higher)
Objectives
•The group was tasked with identifying interventions helpful for health professionals as well as patients
•Likelihood of achieving full involvement of patients in their own care is dependent on both their own level
of activation and the level of activation of their health care team
Work to date
•Team sourced an outline of interventions
•Narrowed these down to a specific group
•Prepared a draft Intervention toolkit

30. Lower time and cost
Higher cost and more time

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• Any questions?
Q&A Session
Transforming Participation in CKD Programme Peer Review Event 10th
May 2016

33. Specialist Patient / Professional Session
14:40 – 15:20

34. | 34
Patients and clinical teams will break away into separate rooms. The purpose of this session
is not to be divisive but to enable free discussion and networking amongst relevant groups.
Although this will be an informal session some structure is required.
The facilitator will encourage the use of post it notes to share ideas and will also take notes
on themes on a flip chart to ensure all information is captured.
Specialist patient / Professional Session Instructions
Transforming Participation in CKD Programme Peer Review Event 10th
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35. | 35
Patient Team
Transforming Participation in CKD Programme Peer Review Event 10th
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Networking - chatting
Sharing specific ideas on –
• What has gone well as a patient and do they feel they could or would want to be
more involved
• Have they felt involved in the programme as team approach – co-production
• Have they done surveys – what has been their experience of this
• Have they been a patient volunteer and do they think there is more that can be done
in this role
• Sharing of experiences to take back to units and also programme.
• Sharing of experiences to inform cohort 2

36. | 36
Health Care Team
Transforming Participation in CKD Programme Peer Review Event 10th
May 2016
• What has been experience regarding engagement across the whole MDT – is there a
disparity in engagement from each discipline ( nursing staff, medical staff, dieticians
etc)
• How have teams managed and organised themselves without additional resource to
implement PAM/PROM? ( get examples)
• What are experiences of patient volunteering
• What are thoughts on further spread – what will be required to embed this?

37. What advice would we give Cohort 2?
Richard Fluck & Jonathon Hope
15:30 – 16:00

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This session is an open mic session and we will be asking each Renal Unit team to
offer 1 or 2 pieces of advice that they would give to Cohort 2.
Please use the templates provided. A roving mic will go around the room and
feedback will be captured and taken back as part of the TP-CKD Programme Learning
to give to Cohort 2
What advice would we give Cohort 2 - Instructions
Transforming Participation in CKD Programme Peer Review Event 10th
May 2016

39. Richard Fluck
Nephrologist, Derby and Co-Chair
of TP-CKD Programme
Richard.fluck@nhs.net
Jonathon Hope
TP-CKD Patient Co-Chair
jonathonhope@msn.com
Patricia Muramatsu
Senior Strategic Advisor
Person Centred Care Team, NHS
England
p.muramatsu@nhs.net
How to find out more
Karen Thomas
Head of Programmes
UK Renal Registry
Karen.thomas@renalregistry.nhs.uk
Sarah Evans
TP-CKD Programme Coordinator
UK Renal Registry
Sarah.evans@renalregistry.nhs.uk
Rachel Gair
Person Centred Care Facilitator
UK Renal Registry
Rachel.gair@renalregistry.nhs.uk
Ron Cullen
CEO
UK Renal Registry
Ron.cullen@renalregistry.nhs.uk
Contact Think Kidneys
www.linkedin.com/company/think-
kidneys
www.twitter.com/ThinkKidneys
www.facebook.com/thinkkidneys
www.youtube.com/user/thinkkidneys
www.slideshare.net/ThinkKidneys
www.thinkkidneys.nhs.uk/CKD
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