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: info@pocf.org.uk

•Glenn Robert email: glenn.robert@kcl.ac.uk