A national learning event took place in June 2014, to explore how best to present data from the Cancer Patient Experience Survey (CPES) in order to drive improvement. Outcomes from the event will help to shape the future presentation of CPES data, so that it is more accessible and easier for professionals and the public to use and interpret. The event was held by NHS Improving Quality's Experience of Care team, in partnership with Macmillan Cancer Support, and NHS England's Insight team, to bring together cancer managers, lead nurses and lead clinicians. They heard from speakers including patient Bonnie Green, Ben Page, chief executive of Ipsos Mori, and Sean Duffy, National Clinical Director for cancer. Delegates also undertook group activity looking at the barriers that exist in translating data into improvement, and tailoring data for the right audiences. The event forms part of NHS Improving Quality's wider work with NHS England looking at how the NHS is using the CPES data to reduce variation in the cancer patient experience. CPES, part of the national survey programme commissioned by NHS England, generates data and insight into the experiences of cancer patients. - See more at: http://www.nhsiq.nhs.uk/news-events/news/using-insight-data-to-improve-patient-experience.aspx#sthash.Yh1yiQ6y.dpuf

1. 25th June 2014
Best Practice Principles in presenting
Cancer Patient Experience Survey Data
for Improvement

2. Catherine Thompson
Head of Patient Experience, Acute
Care, NHS England
Welcome and Introduction
to the day

3. www.england.nhs.uk
Learning for
Change
Best practice principles
in presenting Cancer
Patient Experience
Survey data for
improvement
25 June 2014

4. www.england.nhs.uk
• Explore how CPES results can be best presented to:
• Meet the needs of patients.
• Meet the needs of trust leaders, clinicians and
patient experience teams
• Drive improvements in services.
• Increase understanding of how Trusts use and
cascade CPES data.
• NOT to change the questions or methodology of
CPES
To inform and develop CPES
reporting

5. www.england.nhs.uk
• Shared with Quality Health (current CPES provider),
CPEAG
• Develop a Quality Improvement Resource that will
help people to put the CPES data to greatest use
• Your contributions are essential to the process.
The outputs from today

6. www.england.nhs.uk
• If you would like to participate in a follow up telephone
interview to share innovative practice in using the
CPES data make contact with a member of NHS
Improving Quality
• Live Tweet the event using #Insight2Improve
Throughout the day

7. Dan Wellings
Head of Insight and Feedback
NHS England
@danwellings
An update from NHS England Patients
and Information Directorate

8. Building choice of high quality support for commissioners
FFT and beyond – Insight and
Feedback in the NHS
Dan Wellings
Head of Insight and
Feedback – NHS England

9. Our vision for insight & feedback
“Our ambition is for the NHS to become a world class
customer service. Above all this means always listening
to what our patients & service users tell us.
By routinely gathering people’s comments, feedback,
complaints & suggestions, we can construct a rich
database of information & evidence that will enable us to
commission the services people want. This is what we
mean by insight”
Transforming participation in health & care Sept 2013

10. Insight in practice…
• Using qualitative and
quantitative data to inform what
we do
• Using whatever data sources
we have - not just surveys but a
whole range of market and
social research techniques
• Always asking the question,
what don’t we know?
• As much an art as science
• Answering the question, “So
what?”
“The most important single
change in the NHS in response
to this report would be for it to
become, more than ever before,
a system devoted to continual
learning and improvement of
patient care, top to bottom and
end to end”
A promise to learn – a
commitment to act
The Berwick Report

11. Why is it important?
“The confidence that individuals have in
their beliefs depends mostly on the
quality of the story they can tell about
what they see, even if they see little.
We often fail to allow for the
possibility that evidence that should
be critical to our judgement is missing
– what we see is all there is”
Daniel Kahneman
Thinking, Fast and
Slow

12. The Insight
Strategy

13. Insight &
Feedback
Less descriptive
LessgeneralisableMoregeneralisable
More descriptive
In depth interviews
Experience Based Co-Design
Focus groups
& patient forums
NHS Trusts
CCGs
Healthwatch
Patient organisations
Surveys
GP Patient Survey
Bereaved Voices
Cancer Patient Experience Survey
NHS Staff Survey
PROMs
Online reviews
& ratings
NHS Choices
Patient Opinion
IWantGreatCare
Care Connect
Patient stories
HealthTalkOnline
Patient Voices
Feedback tools
(kiosks, SMS, apps)
Examples include:
Hospedia
Synapta
Feedback apps
Social media
listening
Salesforce
Polecat
Healthberry
Public
Meetings
NHS Trusts
CCGs
Matrix of insight methods from Measuring patient experience: evidence scan Health Foundation, June 2013
Friends & Family Test
Complaints

14. Objective of Insight Strategy
To establish a clear strategic vision for how the different
elements of insight & feedback can complement each
other most effectively, to be greater than the sum of their
individual parts in giving us a clear picture about what
patients and the public think of their NHS services

15. FFT and other data
– Review raised a question mark over perceived purpose
– It has different characteristics from other surveys
15
FFT
• Real-time
• Ward-level
• Effective for service improvement
• Can be used as early-warning system
• Not representative
National surveys
• Robust, comparable data at Trust level
• Data on a range of issues
• Suitable for relative scores
• Not meaningful to front-line staff
• Has not historically changed behaviours
• FFT and the national survey programme offer complementary sources
of Insight
• FFT is a formative measure: it provides data to improve services
• National surveys are summative measures: they provide an accurate
picture of relative performance

16. Means nothing if nothing is done

17. dan.wellings@nhs.net
Thank you

18. The CPES – how can
patients and public use it to
drive change?
• Bonnie Green
• Service User and Carer
• June 2014

19. What I’m covering
– Why am I here
– Working with Macmillan
– Working with my local commissioner
– Working with my local provider

20. My story
My husband’s story
Why am I here

21. Working with Macmillan
• Worked with
Macmillan last
summer to produce
a guide to create
more patient/public
awareness of the
CPES and how the
data can be utilised
to improve the
patient experience
http://be.macmillan.org.uk/be/p-21015-driving-
change-in-local-cancer-care.aspx

22. • To support people affected by cancer to navigate the National Cancer Patient
Experience Survey (CPES)
• To outline the key themes covered in the CPES that patients have said are
important to them
• To enable them to find CPES data they feel is most relevant
• To empower them to use relevant CPES data, e.g. local or tumour specific and
use it in their roles as patient/carer representatives in a range of settings such as
CCGs, Healthwatch, hospital groups/committees, to influence service
improvement
Aims and objectives of the guide:

23. What we considered important to
highlight:
– Explaining what
the CPES is
– What the data
indicates
– How it can be
used
– That it
represents the
experiences of
70,000 cancer
patients

24. Who was involved

25. How has the guide been distributed
• Copies sent to 80 cancer patient representatives on
Healthwatch
• Disseminated via Macmillan’s Service Development
Team to PPI leads in SCNs, CCGs and Health &
Wellbeing Boards
• Handed out at events e.g. Macmillan Parliamentary
Question Time, Pan London Cancer User Partnership
• Over 200 copies ordered from be.macmillan
What’s still to do
• Refreshed distribution in September alongside CPES,
e.g. circulation to all Healthwatches, Macmillan
information centres, Macmillan involvement
coordinators

26. How have I utilised the CPES
results locally
1. My local CCG
2. My local provider

27. Questions and Discussion

28. Dr Sean Duffy, National Clinical
Director, Cancer
NHS England
An overview from NHS England

29. Activity 1.
Turning insight into improvements
and solutions

30. www.england.nhs.uk
Model for
Improvement

31. Ben Page, Chief Executive
Ipsos MORI
@benatipsosmori
Data and what works well

32. Bringing data to life, tailoring CPES
data to the right audience
Activity 2

33. Gill Starkey
Northumbria NHS Trust
Case Study

34. Northumbria Healthcare NHS
Foundation Trust Experience

35. One of the largest geographical trusts in
England.
Provides acute and community health services
and adult social care to a population of over
half a million people in the North East.
The trust has nine hospitals (three general
hospitals plus six community hospitals)
and employs about 10,000 staff.
Northumbria Healthcare NHS
Foundation Trust

36. Director of Patient Experience
Patient Experience Team
Executive management team support
Ensure patients & families are always included
Transparency
Quality Council
The Northumbria Way

38. Quality Council
Shared Purpose
Patient Perspective
2 minutes of your time
Friends and family
Inpatients – best in North East region and within top 20%.
Outpatient survey 2011/12 – 5th best in the country.
King’s Fund 2013 - study identifying Northumbria as one of 30 Trusts who
provide consistently good patient experience in acute, outpatient and A&E.
Quarterly monitoring of A&E across 3 sites – within top 20%.
General patient experience

39. Cancer patient experience
In top 10 for first 3 surveys :-
What happens with results?
CNS meeting
Lead Clinicians / MDT’s
Cancer locality group
Trust board
Safety and quality panel
Patient/ Carers

40. Strong membership :-
Communication
Peer review
Lung cancer project
Orthotics
Publicity – business cards
Detailed analysis of CPES
Patient / Carer User Group

41. Mainly from patient comments
Communication :- Sage and Thyme
Advanced Communications
Written assessment / care plan
Financial support
Detailed lung patient survey
Research
Actions

42. 24 hour chemotherapy helpline
CNS’s at ODU report
Acute Oncology service
Survivorship programmes
Clinical Psychology
Teamwork
Primary Care links
PATIENT/ CARERS
Good practice

43. Staying in top 10!!
Environment
Capacity
Cumbria
New Emergency Care Hospital
Challenges ahead

44. Thank you for
listening– any
questions?

46. Julie Wells
Director
Transforming Health Ltd
&
Kristin Gustafsen
Programme Manager
Imperial College Healthcare NHS Trust
The Macmillan Values Based
Standard

47. Macmillan Values Based
Standard®
What we have achieved and learnt
to date
Julie Wells

48. Macmillan Values-Based
Standard™
• Naming – “I am the expert on me”.
• Private communication – “My business is my business”.
• Communicating with more sensitivity – “ I’m more than my
condition”
• Clinical treatment and decision-making – “I’d like to
understand what will happen to me”.
• Acknowledge me if I’m in urgent need of support – “I’d like
not to be ignored”.
• Control over my personal space and environment – “I’d like to
feel comfortable”.
• Managing on my own – “I don’t want to feel alone in this”.
• Getting care right – “My concerns can be acted upon”.

49. Trumps!
The relational
aspects of care
trump the
functional ones

50. How we work…….
What is really going on here?Discover
• Use survey data, annual and real time
• Work with staff – identify system failures
• Interview patients, run focus groups
• Observation
• Identify front line improvement teams/leads
What interventions might help?Innovate
• Staff and patients co-design interventions
• Agree measurement systems
• Small tests of change, evaluate and refine
• Diffused leadership and permissions to respond to individual need
• Workplace reflection, learning and support
Measure, sustain and spread improvementImprove
• Develop measurement systems that ensure on-going improvement
• Continually involve patients and staff in understanding ‘how we are doing’
• Embed workplace reflection
• Develop a plan for spreading good practice, including corporate processes such as , recruitment, induction and appraisal
• Feedback results – Ward to Board

51. Triangulation

52. Key achievements to date
• Our Collaborative Phase 1 and 2
• Involvement of front-line staff
• Involvement of patients
• The power of data
• Spread
• National interest
• The Learn Zone

53. The Learn Zone
http://learnzone.macmillan.org.uk

54. Imperial`s
“Way Forward “
by Kristin Gustafsen

55. Aim
• Background
• Demo of presenting results
• Innovation challenges
• Next step

56. Background
• Pilot started Oct 2012
• 4 areas
• Data collection
• Privacy and ward round focus
• Restructure in organisation
• Programme manager November 2013
• 11 areas

57. Discovery and Data Collection
• 1st and 2nd wave areas
• Ward visits
• Build relationships and promote projects
• Data collection
• Patient focus
• Staff focus

58. The Evidence
• National Cancer Survey
• In-Patient feedback survey
• Patient feedback interviews and discussions
• Staff feedback survey
• Staff feedback interviews and group sessions

59. Staff survey results
RAG: Red/Amber/Green
Do you feel that there is good team work in this unit? STF032 88.75
Are you proud of the quality of care that you and the team deliver within this unit? STF040 92.50
Do you encourage patients to raise their concerns? STF033 95.00
Are you able to provide confidentiality and privacy when this is needed, to discuss a mobile
patient's condition or treatment in this unit?
STF029 94.29
When you have concerns do you feel they are actioned by the person you raised it with? STF041 63.75
At work, do you feel your opinions seem to count within the team on this unit? STF039 61.25
Does your manager or a senior member of staff at work, seem to care about you as a
person?
STF037 62.50
Do you feel your role is valued within the organisation? STF020 45.00
Does your manager or team leader encourage your development? STF038 45.00
In this last year, have you had opportunities at work to learn and develop within your role? STF042 43.75
Do you receive recognition or praise for doing good work, from your manager or a senior
member of staff at least weekly?
STF036 53.75
At work, do you feel you have the opportunity to deliver the best service you can every day? STF001 62.50

60. Do you think hospital staff did everything they could to
help control your pain?
Did you feel the staff treated you as an individual
person?
Were you happy with how staff spoke to you
during your stay?
High Performing Questions

61. PERSy Example – Showing Improvement
Did staff pay attention to your levels of general comfort? (E.g. Did
you have enough pillows?)

62. Way Forward Events;
Who, when, where?

63. Themes
Information and feedback
• Patients said; they feel informed about their treatment plan and care,
although 3/10 said they had not received written information
• 3/10 felt that the ward welcome could be improved and they had
experienced being left waiting without being informed about what was
going on, making them very anxious.
• Staff said; they do not always get feedback, and that there is a lack of
positive feedback and praise from senior leaders and managers. The
ward manager do give staff praise sometimes.

64. Co-Design

65. Innovation challenges
• Engagement
• Quick Wins
• Longer term solutions
• Patient involvement
• Project leads
• Resources
• Measures

66. Our Next Step

67. Q&A

68. How best to present data
Activity 3

69. NHS Improving Quality Update

70. Purpose of NHS IQ
Improving health outcomes across England by providing
improvement and change expertise
• Scanning the horizon, ensuring our work is cutting edge to help grow
improvement science, knowledge and skills across the health and
care system
• Develop and implement improvement programmes and building
improvement capability and capacity within the NHS
• Support improvement across the wider NHS

71. Improvement programmes

74. Next Steps
1. Deliver regional learning events in 2014 in partnership with NHS
England and Macmillan “Using CPES for commissioning for continual
quality improvement”.
2. NHSIQ will develop a quality improvement programme aligned to
the CPES, using recognised Quality Improvement methodologies
based upon the Model for Improvement Framework. NHS IQ will
evaluate the knowledge and insight accumulated from the
collaborative programme and the validity of adapting and replicating
the approach in other Patient Experience priority areas.

75. 3. Commission qualitative research into the
conditions for best practice/improvement, by
visiting and discussing key characteristics of a
purposive sample of top performing and “most
improved” Trusts .
4. Develop a peer support and review model
whereby high performing and most improved Trusts
would “buddy” with low performing partner.
5. Publish tools and resources for professionals
using recognised Quality Improvement techniques
for improved patient experience and engagement

76. Reflections on the day and next
steps

77. @NHSIQ
enquiries@nhsiq.nhs.uk
www.nhsiq.nhs.uk
Improving health outcomes across England
by providing improvement and change expertise.