experience-based co-design (ebcd)...consulting and advising experience-based co-design (ebcd)...
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Experience-based Co-design
(EBCD)
Professor Glenn Robert, Chair of Healthcare Quality & Innovation
Florence Nightingale Faculty of Nursing & Midwifery
twitter: @gbrgsy
• What does co-design really mean in the healthcare context?
• What are the theoretical underpinnings of co-design?
• What are the benefits of co-design? Who benefits?
(How do patients and staff experience co-design in the context
of health care quality improvement?)
What does co-design really mean in the
healthcare context?
Experience ≠ satisfaction
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.’
Different ways of involving patients
Complaints Information Surveys Consulting and advising
Experience-based Co-
design (EBCD)
Patient blogs and web-
based stories
Staff and patients working together
to improve services
Adapted from Bate P, Robert G (2006). ‘Experience-based design: from redesigning the system around the patient to co-designing services with the patient’. Quality and Safety in Health Care vol 15 (5), pp 307–10
Co-design & healthcare quality improvement
• value in integrating human-centred tools and
values of co-design into quality improvement
approaches in healthcare organisations
• a co-design approach (Experience-based Co-
design) as applied to quality improvement ‘work’
in healthcare services
Bate SP and Robert G. (2007) Bringing user experience to health care improvement: the concepts, methods and practices of experience-based design. Oxford; Radcliffe Publishing
Experience-based Co-design: A participatory action research approach that combines: a user-centred orientation (EB) and a collaborative change process (CD)
The Experience-based Co-design process
Robert G, Cornwell J, Locock L, Purushotham A, Sturmey G and Gager M. (2015) ‘Patients and staff as co-designers of health care services’, British Medical Journal, 350:g7714
patients at the heart of the quality improvement effort - but not
forgetting staff
a focus on designing experiences, not just systems or processes
where staff and patients participate alongside one another to co-design
services
Some typical touch points of head and neck cancer patients
Film 1
Online toolkit: www.kingsfund.org.uk/projects/ebcd
Survey, 2013
• 59 EBCD projects implemented in 6 countries worldwide (2005-2013); further 27 projects in planning
• EBCD implemented in a variety of clinical areas (incl. emergency medicine, drug & alcohol services, range of cancer services, paediatrics, diabetes care & mental health services)
• EBCD projects typically take between 6-12 months to complete
• free-to-access, online EBCD toolkit is a helpful resource
Donetto S, Pierri P, Tsianakas V and Robert G. (2015) ‘Experience-based Co-design and healthcare improvement: realising participatory design in the public sector’, The Design Journal, 18(2): 227-248
5
3
6
1
25
2
8
Survey summer 2013
Since 2013 … some examples
Where has co-design reached?
• lower levels of involvement in latter co-design process; patients feel
technical dimensions of implementing QI solutions lie with staff?
• Bowen et al suggest further (creative) work is needed to overcome
tendency towards administrative & bureaucratic processes
• Thomson et al (2015) took this recommendation forward with
multiple sclerosis outpatients using future groups, analogies and
physical props
• Iedema et al (2010) highlight the interpersonal burden for patients,
carers and staff in speaking across socio-cultural and
organizational boundaries
• emotional work: requires ongoing support & facilitation to ensure
that patients can play a meaningful role as co-designers in QI
• facilitation role is critical
Hear the voices of the people served
The more patients and families become empowered, shaping
their care, the better that care becomes, and the lower the
costs. Clinicians, and those who train them, should learn how to
ask less, “What is the matter with you?” and more, “What
matters to you?” “Coproduction,” “co-design,” and “person-
centered care” are among the new watchwords, and
professionals, and those who train them, should master those
ideas and embrace the transfer of control over people’s lives to
the people.Berwick D. (2016) ‘Era 3 for Medicine and Health Care’, JAMA 315(13): 1329-1330
Burns, Leitch, Feeley (via Henriks)
What are the theoretical underpinnings of
co-design?
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
• a focus on designing experiences as opposed to systems or processes
(thereby requiring ethnographic methods such as narrative-based
approaches and in-depth observation)
What is Co-Design?
• co-design is a well-established approach to creative practice
• enables a wide range of people to make a creative contribution in the
formulation and solution of a problem
• builds and deepens equal collaboration between citizens affected by, or
attempting to, resolve a particular challenge; users, as 'experts' of their
own experience, become central to the design process
• enables people to engage with each other as well as providing ways to
communicate, be creative, share insights and test out new ideas
• wide range of tools/techniques support co-design process: user personas,
storyboards, user journeys, prototyping and scenario generation
techniquesSource: John Chisholm. ‘What is Co-Design?’ http://designforeurope.eu/what-co-design (accessed March 2016)
Design theory
Berkun, 2004 adapted by Bate. Source: Bate P, Robert G (2006). ‘Experience-based design: from redesigning the system around the patient to co-designing services with the patient.’ Quality and Safety in Health Care vol 15 (5), pp 307–10
What makes a good service: designing experiencesPerformance
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
Co-design
What is Co-Design?
“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
codesign and entails service development driven by the
equally respected voices of users, providers and
professionals.”
DEMOS, 2008
Source: Filipa Veiga Tavares, User Experience (UX) Strategist and Designer
Design theory & QI approaches
What makes a good service: designing experiences
Source: Robert G & Macdonald A. (manuscript in preparation) ‘Designerly’ and ‘Design-like’ approaches to improving the quality of healthcare services’, as adapted from Sanders EB-N & Stappers PJ. (2014) Convivial Toolbox. Generative research for the front end of Design. BIS Publisher; The Netherlands
Embedding design(ers) in healthcare organisations
Designing and implementing improvements
‘Design vs implementation science for systems change’. Posted on November 21, 2016 by jossbailey. https://unpackingsocialdesign.wordpress.com/2016/11/21/2-1-design-vs-implementation-science-for-systems-change/
What are the benefits of co-design? Who
benefits?
The Experience-based Co-design process
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
Adapted from 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
Reception – patient experience
Reception – staff experienceReception – staff experience
Staff views
‘It was one of the most meaningful things I’ve ever done in my entire career I think. That sounds
really trite, but I really do mean it, it was wonderful. I am glad I had the opportunity even though I
felt like an emotional ragdoll by the end of it. It was a great experience. If we could do more of it I
think it would really help. It’s the level of engagement that we should do, but we just don’t invest
the time, and the energy, and the money. We wait for complaints...’ (Interview#05)
‘I think the most important things were that staff really appreciated the time to think about the
experience. It became apparent that they perhaps didn’t have or make time to reflect on what
they do in their daily workings, so I think they actually found it quite cathartic and therapeutic …
the staff really appreciated that their point of view was being listened to because up until that
point the political drive had always been patient experience and now all of a sudden we were
interested in staff experience’. (Facilitator, interview)
Robert G. (2016) ‘Developing person-centred services: the contribution of Experience-based Co-design to high quality nursing care’. In: S Tee (ed.) Person-centred approaches in healthcare: a handbook for nurses and midwives. Buckingham: Open University press
‘When you see the video and you can see the emotion and you can see what’s
happened...it’s very hard to argue with an experience. You can’t argue with that; it’s their
experience. If it’s just written down it’s easy to dismiss, it’s easy to dismiss opinions.
When it’s in your face and you see it, it has a much deeper psychological impact.’
(Interview#03)
‘The power just blows me away because as soon as the story comes up there's a physical
change, they go back in their seats and it's quite confronting even though you prepare
them for it and say, ‘This is what I'm going to show you.’ And these are clinicians that see
this stuff every day, but just to be taken out of their clinical environment, to sit and be
actually talking about the interaction is so powerful.’
(Interview#12)
Robert G. (2016) ‘Developing person-centred services: the contribution of Experience-based Co-design to high quality nursing care’. In: S Tee (ed.) Person-centred approaches in healthcare: a handbook for nurses and midwives. Buckingham: Open University press
Examples of recent/ongoing EBCD projects
• ‘My care, my voice’ project in a learning disabilities service
• Enhancing experience of carers in chemotherapy outpatient setting
• Optimizing psychosocial recovery outcomes for people affected by mental
illness (CORE study)
• Collaborative rehabilitation environments in acute stroke (CREATE study)
• ‘Accelerated’ EBCD
Film 2
Developing and testing feasibility of complex interventions
Tsianakas V, Robert G, Richardson A et al. (In press) ‘Enhancing the experience of carers in the chemotherapy outpatient setting: an exploratory randomised controlled trial to test the impact, acceptability and feasibility of a
complex intervention co-designed by carers and staff’, Supportive Care in Cancer
To develop and test a carer support package in the
chemotherapy outpatient setting using EBCD:
• 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
Outcome measures
Intervention Control Mean difference
95% CI p value
Baseline Follow-up Baseline Follow-up
Practical advice about managing cancer symptoms
48.5 69.8 50.1 43.9 26.8 14.4 to 39.1
<.001
Information Needs Scale 2.81 1.10 2.77 3.23 -2.15 -3.22 to -1.07
<.01
Confidence in supporting patient if their health gets worse
5.6 6.4 6.5 5.4 -1.643 -2.96 to -0.32
.016
Getting to the CORE: testing a co-design technique to optimise psychosocial
recovery outcomes for people affected by mental illness
Palmer V, Chondros P, Piper D, Callander R, Weavell W, Godbee K, et al. (2015) The CORE Study protocol: a stepped wedge cluster randomized controlled trial to test a co-design technique to optimize psychosocial recovery outcomes for people affected by mental illness. BMJ Open
Palmer V, Chondros P, Piper D, Callander R, Weavell W, Godbee K, et al. (2015) The CORE Study protocol: a stepped wedge cluster randomized controlled trial to test a co-design technique to optimize psychosocial recovery outcomes for people affected by mental illness. BMJ Open
COLLABORATIVE REHABILITATION ENVIRONMENTS IN ACUTE STROKE
Fiona Jones, Geoff Cloud, Christopher McKevitt, Alastair Macdonald, Glenn Robert, Ruth Harris, David Clarke
Evaluating the impact of co-designed interventions: data
triangulation
Evidence of change in activity levels? SSNAP data
PROM and PREM
Non-participant
observations
Behavioural Mapping
Interviews
Evaluating the impact of the co-designed interventions
Primary outcome measure: amount and frequency of patient activity captured through behavioural mapping (pre and post intervention implementation)
AIM: To estimate what proportion of a weekday and weekend day, stroke survivor’s recovering within a typical rehabilitation setting, spend in physical, social and cognitive activities
No physical activity72%
Repositioning2%
Transferring2%
Mobilising1%
ADL8%
Therapy1%
Independent practice0%
Other1%
Unobserved13%
Physical activity (N=713 observations)
What did we find out about activity on Ward 39?
‘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)
http://www.healthtalk.org/peoples-experiences/improving-health-care/trigger-films-service-improvement/topics
Asthma
Atrial fibrillation
Autism
Caring for someone with dementia - dealing with the system
Caring for someone with dementia - the experience of carers
Coordinating care
Desperately not seeking health care: autistic patients and primary care
Diabetes type 2
End of life care
Ethnic minority mental health
Experiences of unexpected maternity care
Inpatient medical ward experiences
Intensive care unit
Improving care for people with an indwelling urinary catheter
Intermediate care following a stroke
Learning disabilities & the health service
Lung cancer
Parkinson’s Disease
Psychosis
Quality Time: Experience-based Co-design in the Emergency Department
Raising concerns
Stroke
Young parents
Young people and depression
‘Trigger’ films
Final thoughts
Final thoughts
• codesign represents a radical reconceptualisation of the role of patients
and a structured process for involving them in all stages of quality
improvement
• focus needs to shift away from collecting more data on patient experience
towards embedding codesign as a way of doing quality improvement
‘work’
• evidence is growing about the effectiveness of codesign approaches but
lack of evaluation of other approaches makes comparison difficult
Current EBCD research projects
• Radically Engaging Formerly Incarcerated Individuals in Service Improvement: First Pilot of
Experience-Based Co-Design (EBCD) in the United States
• Co-design for better experiences in end-of-life settings. A transdisciplinary project
• Measuring the burden of food‐related quality of life in inflammatory bowel disease: developing
and testing interventions that are relevant to, and designed by, people with IBD
• Using co-production to improve patient carer and staff experiences in health care
organizations: a multi-centre, mixed methods evaluation in inpatient stroke units
• Empowering midwives and health visitors to reduce maternal and child obesity through tailored
breastfeeding support: an Experience-Based Co-Design study
Further information
•EBCD toolkit: www.kingsfund.org.uk/projects/ebcd
•EBCD LinkedIn group:
www.linkedin.com/groups/Experiencebased-codesign-6546554
•twitter: @gbrgsy, @PointofCareFdn
•Course team email: [email protected]
•Glenn Robert email: [email protected]