The document introduces experience-based co-design (EBCD), a participatory action research approach that emphasizes collaboration between users and healthcare staff in improving service quality. It highlights the importance of designing experiences rather than just focusing on systems, advocating for active patient involvement to identify needs and propose solutions. The document further outlines methods used in EBCD, including emotional mapping and prototyping, and discusses various implementations and outcomes of EBCD in healthcare settings.

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ENGAGING SERVICE USERS AND HEALTHCARE
STAFF IN QUALITY IMPROVEMENT: A
PRACTICAL INTRODUCTION TO EXPERIENCE-BASED
CO-DESIGN
Florence Nightingale Faculty of Nursing
GLENN ROBERT & Midwifery
National Nursing Research Unit
Overview
①
What is Experience Based Co-design, and why do it?
②
Method
③
Evidence base
④
The case of the disappearing co-design phase ...
What is
Experience-based
Co-design … and
why do it?
A participatory action research approach that
combines: a user-centred orientation (EB) and a
collaborative change process (CD)
Online toolkit Design theory
• draws its inspiration from a subfield of the
design sciences such as architecture and
software engineering
• distinctive features are:
– direct user and provider participation in a face-to-face
collaborative venture to co-design services,
and
– a focus on designing experiences as opposed to
systems or processes (thereby requiring
ethnographic methods such as narrative-based
approaches and in-depth observation)

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What makes a good service: designing experiences
Performance
Is it
functional?
Lean
Engineering
Is it safe
and
reliable?
Safer
Patients
Initiative
The
Aesthetics of
Experience
What does
it feel like?
Human
environment
Physical
environment
EBCD
Berkun, 2004 adapted by Bate
Healthcare quality improvement from
a design perspective
• must obviously fulfil the core task and be safe
(performance and engineering)
• must ‘appeal’ at the emotional and sensory
level (aesthetic)
• patients & carers need to be active rather
than passive, using their specialist form of
knowledge (experience)
The biggest untapped resources in the health system are not
doctors or nurses but users. We need systems that allow people
and patients to be recognised as producers and participants, not
just receivers of systems… At the heart of [co-design], users will
play a far larger role in helping to identify needs, propose
solutions, test them out and implement them, together.
Cottam H, Leadbeate, C (2004). Health: Co-creating services. RED Paper 01. London: Design
Council. Available at:www.designcouncil.info/mt/red/health/redpaper01.pdf
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A focus on designing experiences, not just improving
performance or increasing safety
Putting patient experiences at the heart of the quality
improvement effort – but not forgetting staff
Where staff and patients do the designing together (co-design
rather than re-design)
And, in the process, improving day-to-day experiences of
giving and receiving care
Complaints Information Surveys
12
Consulting
advising
Experience-
Based Co-
Design (EBCD)
Adapted from Bate Robert, Quality Safety
in Health Care, (2006)
Different ways of involving patients
Patient blogs and
web-based
stories
Staff patients
working together to
redesign services

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For me, this is about ‘Oh God, they’re our patients, aren’t
they?’ When people watch the film, they might think ‘I
remember that lady.’ They know they’re our patients – they
can’t get away from the fact – but it actually makes it more
real for them.
Whatever way they’re captured, it’s about capturing it so
that people recognise ‘These are patients I have cared for,
nursed, met, who are saying this’… and I think that’s what is
so different from other improvement work. in terms of things
like discovery interviews and focus groups. It’s that direct
connection between them.
The method

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Methods
• Value of patients, carers and staff experiences
• Stories not surveys
• ‘Deep dives’ and direct observation
• ‘Touchpoints’ and emotional mapping
Experience 7 sa8sfac8on
Patient survey
Overall, did you feel you
were treated with respect
and dignity while you were
in hospital?
Yes, always
Overall, how do you rate
the care you received?
Excellent
“The other thing I didn’t raise and I
should have done because it does
annoy me intensely, the time you have
to wait for a bedpan. ….elderly people
can't wait, if we want a bedpan it’s
because we need it now. I just said to
one of them, ‘I need a bedpan please.’
And it was so long bringing it out it was
too late. It’s a very embarrassing
subject, although they don't make
anything of it, they just say, ‘Oh well, it
can't be helped if you’re not well.’ And
I thought, ‘Well, if only you’d brought
the bedpan you wouldn't have to strip
the bed and I wouldn't be so
embarrassed.’
Humanising healthcare
Forms of humanization
insiderness
agency
uniqueness
togetherness
sense-making
personal journey
sense of place
embodiement
Forms of dehumanization
objectivication
passivity
homogenization
isolation
loss of meaning
loss of personal journey
dislocation
reductionist body
Todres L, Galvin T and Holloway I. (2009) ‘The humanisation of health care: a value framework for qualitative research.
Int J of Qualitative Studies on Health and Wellbeing, 4: 68-77
Staff: a ‘deep dive’ Reception – patient experience

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Reception – staff experience
Reception – staff experience Carrying out observations
Sequence of feedback events
Emotional mapping exercise Carrying out patient interviews

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Touchpoints
• Critical points
• ‘Big’moments (good and bad)
• Moments of truth
• Emotional ‘hotspots’
Some typical touch points of head and neck cancer patients
Extract from patient film – a touchpoint

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Running the co-design event
Co-design event – patients and staff together
• Watch film of patient
stories
• Hear what the
patients have
prioritised
• Hear what staff have
prioritised
• Patients and staff
agree on priorities
• Form working co-design
groups to make
these improvements
The co-design event
Prototyping
Building prototypes helps a group to move beyond talking and
thinking about a problem to actually making progress toward
action. Perhaps most important, they are real and physical –that
is, they assume some material manifestation.
• Building to think
• Learning faster by failing early (and often)
• Giving permission to explore new behaviours
Coughlan P, Suri JF, Canales D (2007). ‘Prototypes as (design) tools for behavioral and organisational change: a
design-based approach to help organizations change work behaviors’. The Journal of Applied Behavioral Science, vol
43, pp 122–24

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Multiple models of emergency and short-stay
services: Luton and Dunstable
Testing solutions – personas
Do the second design solutions work for:
• an old person with dementia
• a car accident victim in and out of consciousness
• a person for whom English is not the native tongue
• a young adolescent (or others)
It was quite funny to see them
lifting up their chairs … It’s a symbol
of the project that those chairs are
those patients’ seats, and it’s about
the staff and the patients together,
just moving everything around, so it
becomes the symbol for the whole
project.
Where user and provider can work together to optimise the
content, form and delivery of services. At its most highly
participative extreme, this process is referred to as co- design and
entails service development driven by the equally respected voices
of users, providers and professionals.
Bradwell P, Marr S (2008). Making the Most of Collaboration. An international survey of public
service co-design. London: Demos.
The evidence
base

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EBCD in Australia
• EDs in seven hospitals in NSW
– 3 EDs (stage 1)
– 4 EDs partnered with another department (stage 2)
• variation in implementation:
– 16-40 patient interviews (mean 24)
– 21-53 staff interviews (mean 37)
– 0-41 hours of observation (mean 10)
EBCD in Australia
Common improvement priorities in all seven EDs:
• Patient and carer comfort and privacy
• Physical space for staff and patients
• Communication and information flow
For example:
• Designated nurse to manage waiting room and communicate
with patients
• ‘Informed waiting’ training for all staff
• ED redesigned to ensure both triage nurse and clerical staff have
clear view of the waiting area
Piper D, Iedema R, Gray J et al (2012). ‘Utilizing Experience-based Co-design to improve the experience of
patients accessing emergency departments in New South Wales public hospitals: an evaluation study’. Health
Services Management Research, vol 25, pp 162–72.
The primary strength of EBCD over and above other service
development methodologies was its ability to bring about
improvements in both the operational efficiency and the inter-personal
dynamics of care at the same time.
EBCD teaches project staff new skills; it enables frontline staff to
appreciate better the impact of health care practices and
environments on patients and carers; it engages consumers in
‘deliberative’ processes that were qualitatively different from
conventional consultation and feedback.
Iedema R, Merrick E, Piper D et al (2010). ‘Co-designing as a discursive practice in emergency
health services: the architecture of deliberation’. The Journal of Applied Behavioural Science, vol 46
(1), 73–91.
Breast lung cancer services, London
• Knowledge skills transfer:
– trained 2 in-house QI specialists
– mentored through the process
• Fieldwork involved:
– 36 filmed narrative patient
interviews
– 219 h of ethnographic
observation
– 63 staff interviews
– a facilitated EBCD process over
12-month period
• Mapped quality improvements
and studied sustainability
• 7 co-design groups
• 56 quality improvements
implemented
• 19-22 months after initial
implementation, 66% of
improvements sustained
– ‘Quick fix’ solutions: 28 with 24
sustained
– ‘Process redesign’ solutions: 9
with 5 sustained
– Cross service or
interdisciplinary solutions: 14
with 8 sustained
– Organisational level solutions:
5 with 2 sustained
• Crucial role of facilitators in
determining staff experiences
of the EBCD approach
Tsianakas, V., Robert, G., Maben, J., et al. (2012). ‘Implementing patient centred cancer care: using experience-based co-design to improve patient
experience in breast and lung cancer services’. Journal of Supportive Care in Cancer, published online DOI 10.1007/s00520-012-1470-3
The aim
To develop and test a carer support package in TTTooo dddeeevvveeellloooppp aaannnddd ttteeesssttt aaa cccaaarrreeerrr sssuuuppppppooorrrttt pppaaaccckkkaaagggeee iiinnn tttthhhheeee cccchhhheeeemmmmooootttthhhheeeerrrraaaappppyyyy
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• Understand support provided by healthcare professionals to
carers
• Develop a short film depicting carers’ experiences
• Bring healthcare professionals and carers together in co-designing
components of an intervention for carers
• Develop and implement a carer intervention.
• Explore feasibility and acceptability, impact on carers’ knowledge
of chemotherapy and on their experiences of providing informal
care.
Developing the support package
• Support package developed through ongoing co-design
meetings.
• Carers and staff reviewed package and decided how, where,
when and by whom it would be delivered
• New scripted 25-minute film (on DVD), grounded in carer
experiences using their quotes/stories about situations that may
arise. Healthcare professionals on film offering advice and
strategies on how to cope in these situations
• Written resource provided alongside DVD

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Carers of patients receiving outpatient
chemotherapy
Leaflet DVD
Group
consultation
Delivering the intervention
• Delivered by a chemotherapy nurse in one-off consultation of no
more than five carers
• Provided an opportunity for carers to watch a DVD developed
specifically for this purpose
• Engage in conversation facilitated by chemotherapy nurse
• Carers given ‘Take care’ leaflet and sections explained
• Carers’ role in process acknowledged and opportunity to talk
about effects and own concerns
• Carers given own copy of DVD and leaflet and encouraged to
consult throughout chemotherapy process
Outcome measures
Survey, 2013
• Online survey to 107 practitioners and researchers
• 18 follow-up telephone interviews
• 59 EBCD projects implemented in 6 countries worldwide
(2005–13) and further 27 in planning
• Implemented in a variety of clinical areas (including
emergency medicine, drug and alcohol services, cancer
services, paediatrics, diabetes care and mental health
services)
• Projects typically take 6–12 months to complete
• Free-to-access online toolkit ‘a helpful resource’
Donetto S, Tsianakas V and Robert G (2014). Experience-based Co-design: Mapping where we are
now and establishing future directions. London: King’s College London.
5
3
6
1
25
2
8
Survey summer
2013

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Thinking about your project/s, what were the strengths of the EBCD
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
It really engaged patients/carers
It really engaged straff
It allowed discussion of difficult topics in a supportive environment
It led to clear improvement priorities
It really made a difference to the way we do things around here
approach?
Answered: 41 Skipped: 20
Thinking about your project/s, what were the weaknesses of the
0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%
It took too long
It was too compilicated
It cost too much
Staff did not engage with the project
Patients/carers did not engage with the project
EBCD approach?
Answered: 41 Skipped: 20
Survey findings
• Training and support: 50% of those who have led
EBCD projects did not receive any formal training
• Role of non-participant observation: relatively under
used as an approach
• Role of film: 50% of projects included filming patients
• The scale of change: ‘sweating the small stuff’
• Co-design: a complex social intervention that is
challenging to implement whose impact and
outcomes are difficult to evaluate
• Evaluation: less than half were aware of the costs of
their project(s); no formal cost-benefit or cost-effectiveness
studies of EBCD have been undertaken
Evaluations of EBCD
• Suggest it is an effective way to make improvements and leave
a legacy of cultural change
• But – costly and time intensive
• Can we make it cheaper and faster? Testing the use of trigger
films made from a national archive alongside EBCD techniques
• Re-analysis of lung cancer and intensive care transcripts from
HERG/Healthtalkonline collections
Our research questions
• Is the accelerated approach acceptable to staff and patients?
• How does using films of national rather than local narratives
affect the level and quality of engagement with service
improvement by local NHS staff?
• How well do national narratives capture and represent themes
important to local patients’ own experience?
• What improvement activities does the approach lead to?
• What are the costs compared to EBCD?

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‘Accelerated’ EBCD: improvement
activities and cost
• similar improvement activities to
standard EBCD projects
• 48 improvement activities in total:
– 21 small scale changes
– 21 process redesign within teams
– 5 process redesign between
services/activities
– 1 process redesign between
organisations
• costs of AEBCD are around 40% of
EBCD (excluding one-off costs of
developing a national trigger film)
EBCD in mental health settings
• Sunshine Acute Adult Psychiatric Unit, North Western Mental
Health, Melbourne (2008)
• South London and Maudsley NHS Foundation Trust, eg self-injecting
addictions service (2011/12)
• MH ECO (2006 onwards) and CORE study in community mental
health (2013–16), Victoria
• Oxleas NHS Foundation Trust (acute mental health unit,
2012/13)
Getting to the CORE: testing a co-design technique to optimise psychosocial
recovery outcomes for people affected by mental illness
The case of the
disappearing co-design
phase
What worked for us was the frequent short meetings, and
keeping in close contact. And I think for the patients and
relatives to be there kind of held the staff to account, and
to their action points. I mean they did divvy things up…
there was something about, definitely for staff because of
that thing that I said before about that humanistic kind
of connection that it really drove them to complete
actions. (Interview #08)
I think I would probably do more co-design events and sort
of do more feedback as you go along really. I think
definitely I would have benefitted from more co-design.
(Interview#05)
I think that it worked because it was collaborative and there
were mixed groups of people doing the work, they held each
other to account. And kept people on track where perhaps it
might have slid… I think that it's harder to do the co-design or
collaboration after that initial problem solving phase because
I think health professionals are used to being in charge of
making things happen.(Interview #10)
I think there's a very big recognition of co-design as a way to go
forward with things, but a lot of the services are steeped in
the processes they've already got. And I think they're finding it
hard to see where does it fit in with what we currently do. And
it's about that medical model I think, where you've got the
patient [and] carers who are just the receivers of service,
‘what do they know?’ (Interview#07)

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We got together and we discussed the narratives and
we tried to identify, in collective discussion, where or
how things could be improved, but when it then came
down to what they were actually going to do, those
decisions were taken by the frontline managers, the
nursing managers, and their line managers. So there
was certainly no co-design at that point... I think you
can then identify how the hierarchies worked within
the organisation, co-designed up to a point, and then
it reverted back to a much more hierarchical way of
organising things... a workshop with a draft action
plan which was then taken away and worked on
behind closed doors. (Interview#02)
[The co-design group was] nerve
wracking ... I was sitting across a
[meeting] table from a woman that I
knew, I’d looked at her scan and I was
going to have to tell her that her
cancer had come back in the next clinic
… and she’s telling me how brilliant her
life is …
(Adams et al, forthcoming)
Service designers health care
organisations
‘Service design is entering the fields of organisational studies and
social change with little background knowledge of their
respective theories and principles’ ... (and practices??)
‘our own expectations (as participatory designers) about
trajectories of change can also be naive when working in
unfamiliar and complex organizational contexts. The slow (and
uneven) progress from ideas to implementation, and the way
that project proposals have been adapted and fused with other
inputs to stimulate the actual changes, challenged our own
morale and confidence about the impact of the work.’
Sangiorgi, (2010) International Journal of
Design; Bowen et al, (2013) CoDesign
Much is to be gained from effective integration of evidence-based
and user experience-based approaches to design for healthcare
services (Hagen, 2014).
Requires ‘some collaboration and open thinking’ to bridge the
different philosophical stances of the two approaches, there is
great value in integrating ‘the human-centred tools and values of
user experience design into existing processes and models that
already have leverage within organisations’ (ibid.).
Further information
• EBCD toolkit: www.kingsfund.org.uk/projects/ebcd
• EBCD LinkedIn group:
www.linkedin.com/groups/Experiencebased-codesign-6546554
• twitter: @gbrgsy, @PointofCareFdn
• Glenn Robert email: glenn.robert@kcl.ac.uk