1. The art of engagement…
A practical guide to turning patient
views into meaningful data

2. Aims of the day
• To turn information into relevant key messages tailored to engage
different stakeholders (e.g. local commissioners, providers, people
with epilepsy)
• To understand the process of service user engagement and be
equipped to carry it out
• To practice the facilitation skills needed to collect qualitative data
from service users in a local area
• To analyse information mapped to identify gaps in service provision
• To understand the different types of health data within a local
authority area or health economy and how to access public domain
and UCB data
• To understand presentation of numerical and graphical data
• To collate relevant data to map existing service provision

3. Programme
9.00- 9.30 Arrival and coffee
9.30-9.40 Welcome, introductions and expectations for the day
9.40-9.50 The importance of baseline data – setting the scene, Charlie Peel
9.50- 9.55 Questions
9.55-10.05 Introduction to the workshop – what we’re doing and why
10.05-10.35 Step 1: Finding your stakeholders
Step 2: Deciding how to access them
10.35-10.40 Break
10.40-11.20 Step 3: Gathering the information
11.20-12.00 Step 4: Analysing your findings
12.00-12.50 Step 5: Presenting your findings
12.50-13.00 Opportunity for any burning questions
13.00-14.00 Lunch
14.00-16.00 UCB session on data
16.00-16.30 Reflection on original hopes for the day
Agreement of future action, and close

4. Understanding an area:
the importance of baseline data
Charlie Peel
Project Manager

5. Overview
• What does ‘data’ mean?
• Why is it important and what can it tell you?
• How can we use it?
• Discussion:
– what sort of data is available to you?
– How can you use it?

6. Data – what it means
• Dictionary definition:
‘Factual information, especially information
organised for analysis or used to reason or
make decisions.’
• Anything which:
– tells a story,
– demonstrates experience,
– provides insight,
– helps understanding.

7. Why do we need it?
• To reinforce anecdotal or suggested
evidence
• To understand the reality of local services
and support from all angles
• To highlight discrepancies or possible
problems in current systems
• To measure progress
• To understand if changes made are
positive

8. What constitutes as data?
• Qualitative • Quantitative
– Patient opinion and – HES and SUS records
user experience – Service user info
– Professional opinion of gathered through
services survey or en masse
– PROMs – What services are
actually purchased and
– Hospital / services delivered
surveys – Financial records and
– Individual’s case study budgets
– Audit and mapping – Waiting times
– Audit and mapping

9. What counts as a service?
• Baseline data of an area is essentially trying to get a
picture, in as many colours as possible, of local
services
• ‘Services’ can mean:
– Healthcare services within acute setting
– Healthcare and social care services in the community
– Personal assistants
– Equipment, adaptations, suitable housing or
accommodation
– Vocational support
– Leisure and sport facilities
– Financial support and benefits advice
– Complementary medicines such as acupuncture or
massage

10. How can we use it?
• The mapping triangle: core elements to
understanding services
National policy,
guidance and agreed
best practice
What services are What local people are
actually in place experiencing

11. How can we use it?
The mapping triangle – what services
should be like What NICE /
other regulatory
bodies say
Positive
Positive National
practice
practice
policy,
guidance and
What the
What the
agreed best national
national
practice charities say
charities say
What the Royal
Colleges say

12. How can we use it?
How teams,
sectors and What services What data
What data
levels of care are in place indicates
indicates
are working
together
What professionals What
say they’re providing commissioners
think they’re
planning &
purchasing
The mapping triangle –
what services are like

13. How can we use it?
What service users
What people say they’re receiving
think of the
support
available
What local What information
What information
people are people can
people can
experiencing access
access
How families
view the
services and
support The mapping triangle – how
available people experience those services

14. Gaps that can be unearthed
What commissioners think V. What is actually delivered
they’re planning
What HES / SUS data V. How systems are
shows actually working
What services are V. What are available to
available to one person another person with the
same condition…
V. What service users are
What professionals think actually able to access
they are delivering

15. Baselines that can be
established
• What services are in place, where they are and
who can access them?
• What referral routes are in place and how they are
used?
• How many elective and non-elective admissions
there are for a specific client group?
• What are waiting times for services and
equipment?
• What is the satisfaction level with any given
service?
• Information currently available and format
• Current spend on existing services

16. How can you use this info?
Finding Use
1.High volume of 1.Improved self
unplanned epilepsy management; ‘Message in
admissions a bottle’
2.Public transport is 2.Changes to public
affecting people’s ability transport; increased
vocational support
to work
3.Regular meds reviews
3.Individuals don’t feel specifically commissioned;
confident that their community pharmacists
meds are correct trained to provide reviews

17. Introduction to the workshop:
What we’re doing and why
Angie Pullen

18. Finding your stakeholders and
deciding how to access them

19. Case Study
A neurology audit has taken place in Norfolk, Great Yarmouth and
Waveney from July to December 2012. At the same time, some
investigative work into epilepsy services was being undertaken by
the local epilepsy specialist nurse and the Head of Long Term
Conditions for West Norfolk.
They feel that epilepsy services are under resourced locally and that
people with epilepsy are not able to access the services they need
to best support them. The neurology audit findings largely back the
anecdotal evidence that was being gathered around epilepsy
services. These findings have created an opportunity to highlight
epilepsy service provision as a specific stream of work needed.
You have been asked to work with the Head of LTC and the epilepsy
specialist nurse to gather views and experiences from people living
with epilepsy and those caring for people who are, across young
people and adults. The data you gather on individuals will be used
alongside the existing audit data, and the additional data being
gathered by the professionals. It will all be drawn together to make a
case to the commissioners for epilepsy to be focussed on as an
single condition.

20. The data you gather on individuals will be used
alongside the existing audit data, and the additional data
being gathered by the professionals. It will all be drawn
together to make a case to the commissioners for
epilepsy to be focussed on as an single condition.

21. • What is a stakeholder?
• How would you begin the task of
identifying stakeholders in a certain area?
• What approaches and strategies would
you take in communicating with new
stakeholders?

22. Part 1: Identify your stakeholders
People with
epilepsy
CCG Commissioners
Epilepsy Action
branch
Local GPs
Carers Neurologist
Local authority Health and
Wellbeing
board

23. Part 2: Prioritise your stakeholders

24. Part 3: Understand your key
stakeholders
You can ask the following questions which will help you to know
how best to engage with your stakeholders and how to
communicate with them:
• What financial or emotional interest do they have in the outcome of
your work? Is it positive or negative?
• What information do they want from you?
• What is their current opinion of your work? Is it based on good
information?
• Who influences their opinions generally, and who influences their
opinion of you? Do some of these influencers therefore become
important stakeholders in their own right?
• If you don't think you will be able to win them around, how will you
manage their opposition?
• Who else might be influenced by their opinions? (Do these people
become stakeholders in their own right?)

25. Break

26. Gathering the information

27. What does a facilitator do?

28. What does a facilitator do?
• Provides focus and stimulates discussion
• Supports the group
• Participates to promote new discussion
• Acts as a team builder
• Referees group discussion
• Protects participants
• Controls problem people within the group
• Time keeps
• Is pragmatic and neutral
• Encourages feedback

29. Understanding the role of the
facilitator
• Stay neutral. Your role is to create the
process and conditions that enable a
group to enter into a discussion.
• Conduct the discussion without trying to
direct the group to a particular outcome.
• What objectives do you want to achieve by
the end of the session you are facilitating?

30. Provide structure to the discussion
• Use questions to control the flow of focus
group discussions
• Preparing introductory questions
• Open questions
• Linking questions
• Probes

31. Guiding discussion
• Focus on group process. Is the group repeating
itself? Are all members who wish to
participating? Is the discussion staying on track
and on time?
• Explain what you see happening, and ask
participants to confirm if their experience is the
same. Be factual and specific.
• Summarise what is being said.
• Ask questions to open up discussion, to help the
group to decide whether their process is
working, or to think about new directions.

32. Recording the discussion
• This is not the same as taking minutes, though you may
use the recorded discussion to supplement the minutes
• Having the discussion visible helps the group to see the
progress it's making and to refer back to earlier
comments
• Whenever possible, use the speaker's own words, and
be sure to record everyone's comments to avoid creating
tension and resistance

33. Ensuring group is productive
We are now going to do a role play
exercise. Each of you will be given a card,
which will contain instructions on what
kind of participant you will be playing. Two
of you will have the facilitator card.
Facilitators will have five minutes to lead a
discussion on the topics printed on their
cards.

34. Discussion
• Was it productive?
• Did everyone get to contribute?
• How did the facilitators do?
• What were the positives and negatives of
each method of running the discussion?

35. Summarising the discussion
• Share with the group a brief and concise
summary
• Do not introduce any new points, or share
your own personal viewpoint alone
• Capture the important themes of the
discussion
• Tell the group how their comments will be
used

36. Analysing your findings

37. Theming and weighting :Analysing
qualitative data
• Familiarisation: read the transcripts of the interviews and familiarise
yourself with the data. Literally ‘label’ the data so it can be easily
identified and categorised as common themes emerge. Depending
on your consultation, it could relate to age, gender, postcode or for
example, whether a view was prompted or based on actual
experience.
• Organisation: structure the data by collating all the data under
different labels. Start building up an outline of the issues and begin
compiling them under common themes.
• Interpretation: issues and themes can then start to be developed
and tested. This stage - and your ability to develop explanations -
lies at the heart of analysis. Most data is very rich in the levels of
explanation it can offer. You need to think about drawing out and
explaining why patterns, linkages or apparent contradictions are
found in the data.

38. Questions to ask
• What patterns and common themes emerge in
responses dealing with specific items? How do
these patterns (or lack) help to answer your key
questions, aims and objectives?
• Are there any deviations from these patterns? If
yes, are there any factors that might explain
these atypical responses?
• What interesting stories emerge from the
responses? How can these stories help to
illuminate your broader questions?

39. Things to avoid in reporting
qualitative data
• Don’t quantify - that’s not the point of focus groups
• Don’t overuse certain transcriptions/ respondents
• Don’t duplicate quotes
• Don’t misapply quotes
• Make sure quotes are in context and easy to understand
• Don’t ‘sanitise’ quotes - tell it how it is!
• Don’t overdo quotations- use them to illustrate, rather
than tell the story
• Be careful not to compromise confidentiality

40. Group activity
We are now going to split you up into two
small groups. You will each be given a
copy of one of the discussions we have
had as a group. Your task is to pick out
the themes and rank them in order of
importance.

41. Feedback
• How did you find it, generally?
• How did you choose to analyse it?
• What were the challenges?
• How did the way the information was
captured help or hinder you when doing
the analysis?

42. Presenting your findings
You have been asked to write a report with the
local epilepsy specialist nurse and the Head of
Long Term Conditions for West Norfolk to make
a case to the commissioners for epilepsy to be
focussed on as an single condition. Working as
a group, use the statistics document, examples
from the commissioning booklet, a transcript
from the focus group and the Epilepsy Lifecycle
diagram to put together a five minute
presentation for the commissioners.

43. How did you find the task?
• How did you find using and synthesising
the different types of information?
• How did it feel to present in front of a
group?
• Is there anything you feel could have
improved your presentation?

44. Presenting your findings
Charlie Peel
Project Manager

45. Forms of presenting findings
• Powerpoint presentation
• Formal written report
• Published document
• Pictures / graphics
• Flyer / short bulletin
• Website
• Social media

46. Presentations
• Keep info top line – use bullets to prompt
the info you have to share
• Use key words, phrases, stats, quotes,
tables and graphs to make your points –
then talk around them
• Be positive – and if the message is
negative, have positive solutions to lift it
• Keep slides ‘clean’ – too busy and you’ll
lose them

47. Written report
• Less text, more info
– Use graphs and tables for numbers or info
where there are links to make
– Use bullets to list – it’s easier to take in
• Plain English – it doesn’t need long words
– Short, clear sentences
– Simple words
20 people
– Active, not passive were
interviewed
We interviewed 20
people

48. Written reports
Tables display info
succinctly
Bullet points:
•are clean,
•are easy to read,
•help you stick to
your point

49. Displaying information
Try a table:
National standard Current service Possible solutions
Everyone should • Some people have • Review nurse provision to
have access to a access to a neurologist ensure all people with epilepsy
medicines review annually who also access a nurse annually
annually reviews their medication. • Consider telehealth options to
• Others access the nurse. remind individuals to seek their
• Some people have not own review
had a medicine review • Roll out training to community
for 3+ years pharmacists to perform
medicines reviews locally
Etc

50. Pictures and graphics
Graphs show data and
numerical info simply –
and save you lots of
words

51. Quotes
• People living with epilepsy are the experts
and what they say is your evidence
• Capture it and
use it to
illustrate your
points
• Or better still,
use it to make
the point for
you

52. Flyers, web & social media
• Even more succinct!!
• Choose your top three to five most
interesting / important
• Add your evidence: a couple of quotes or
stats
• Short sentences, bullet points and
graphics instead of words where possible

53. Starting points
• A template report has been made for you
• Epilepsy Action have powerpoint
templates
• Look at the sort of thing EA produce – and
follow suit
• Use formats that you know have worked –
what catches your eye when someone’s
giving you information?

54. See your packs for templates, examples and other useful
documents
Thank-you