The art of engagement…

A practical guide to turning patient views into meaningful data

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

Programme9.00- 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

Understanding an area:the importance of baseline data

Charlie Peel

Project Manager

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?

Data – what it means

• Dictionary definition:

• Anything which:– tells a story, – demonstrates experience,– provides insight,– helps understanding.

‘Factual information, especially information organised for analysis or used to reason or make decisions.’

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

What constitutes as data?

• Qualitative– Patient opinion and

user experience– Professional opinion of

services– PROMs– Hospital / services

surveys– Individual’s case study– Audit and mapping

• Quantitative– HES and SUS records– Service user info

gathered through survey or en masse

– What services are actually purchased and delivered

– Financial records and budgets

– Waiting times– Audit and mapping

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

How can we use it?

• The mapping triangle: core elements to understanding services

National policy, guidance and agreed

best practice

What services are actually in place

What local people are experiencing

How can we use it?

Positive practicePositive practice

National policy,

guidance and agreed best

practice

The mapping triangle – what services

should be like

What the national

charities say

What the national

charities say

What the Royal Colleges say

What NICE / other regulatory

bodies say

How can we use it?

What services are in place

The mapping triangle – what services are like

What data indicates

What data indicates

How teams, sectors and

levels of care are working

together

What professionals say they’re providing

What commissioners

think they’re planning & purchasing

How can we use it?

What local people are

experiencing

The mapping triangle – how people experience those services

What information people can

access

What information people can

accessHow families

view the services and

support available

What service users say they’re receivingWhat people

think of the support

available

Gaps that can be unearthed

What commissioners think

they’re planning

What HES / SUS data

shows

What services are

available to one person

What professionals think

they are delivering

What is actually delivered

How systems are

actually working

What are available to

another person with the

same condition…

What service users are

actually able to access

V.

V.

V.

V.

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

How can you use this info?

Finding1.High volume of unplanned epilepsy admissions2.Public transport is affecting people’s ability to work3.Individuals don’t feel confident that their meds are correct

Use1.Improved self management; ‘Message in a bottle’2.Changes to public transport; increased vocational support3.Regular meds reviews specifically commissioned; community pharmacists trained to provide reviews

Introduction to the workshop: What we’re doing and why

Angie Pullen

Finding your stakeholders and deciding how to access them

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.

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.

• 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?

Part 1: Identify your stakeholders

People with epilepsy

CCG Commissioners

Epilepsy Action branch

Local GPs

Carers Neurologist

Local authority Health and Wellbeing board

Part 2: Prioritise your stakeholders

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?)

Break

Gathering the information

What does a facilitator do?

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

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?

Provide structure to the discussion

• Use questions to control the flow of focus group discussions

• Preparing introductory questions

• Open questions

• Linking questions

• Probes

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.

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

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.

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?

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

Analysing your findings

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.

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?

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

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.

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?

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.

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?

Presenting your findings

Charlie Peel

Project Manager

Forms of presenting findings

• Powerpoint presentation• Formal written report• Published document• Pictures / graphics• Flyer / short bulletin• Website• Social media

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

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– Active, not passive

We interviewed 20 people

20 people were

interviewed

Written reports

Tables display info succinctly

Bullet points:•are clean, •are easy to read, •help you stick to your point

Displaying informationTry a table:National standard Current service Possible solutions

Everyone should have access to a medicines review annually

• Some people have access to a neurologist annually who also reviews their medication.

• Others access the nurse. • Some people have not

had a medicine review for 3+ years

• Review nurse provision to ensure all people with epilepsy access a nurse annually

• Consider telehealth options to remind individuals to seek their own review

• Roll out training to community pharmacists to perform medicines reviews locally

Etc

Pictures and graphicsGraphs show data and numerical info simply –

and save you lots of words

Graphs show data and numerical info simply –

and save you lots of words

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

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

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?

Thank-you

See your packs for templates, examples and other useful documents