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PATIENTS AND STAFF AS CO-DESIGNERS OF

HEALTHCARE SERVICES: CO-CREATING PATIENT

EXPERIENCES AND STAFF WELLBEING

Chair in Healthcare Quality & Improvement

GLENN ROBERT glenn.robert@kcl.ac.uk

twitter: @gbrgsy

45 years ago …

2009 Nobel Prize ceremony

• Prize motivation: "for her analysis of economic governance, especially the commons“

• Field: economic governance

• Contribution: Challenged the conventional wisdom by demonstrating how local property can be successfully managed by local commons without any regulation by central authorities or privatization.

"Elinor Ostrom - Facts". Nobelprize.org. Nobel Media AB 2014. Web. 13 Nov 2017. <http://www.nobelprize.org/nobel_prizes/economic-sciences/laureates/2009/ostrom-facts.html>

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Ostrom’s conditions for co-production

• bring together diverse forms of expertise, resources or assets in new and creative ways

• flexibility for participants

• transparent, accountable relationships between participants

• incentives to ‘encourage inputs from both officials and citizens’

Begins to explicate a theory of change for co-production …

Durose C, Needham C, Mangan C et al. (2017) ‘Generating ‘good enough’ evidence for co-production’. Evidence & Policy, 13(1): 135-151

Design theory

• 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)

• Draws its inspiration from a subfield of the design sciences such as architecture and software engineering

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?

DEMOS, 2008

“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.”

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What is Co-Design?

• Co-design is a well-established approach to creative practice

• it 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 techniques

Source: John Chisholm, ‘What is Co-Design?’ http://designforeurope.eu/what-co-design [accessed March 2016]

Co-production and co-design

Co-designing a service involves sharing decision-making power with people. This means that people’s

voices must be heard, valued, debated and then –most importantly – acted upon. Co-production goes one step further by enabling people to play roles in

delivering the services that they have designed.

Slay & Stephens (2013). Co-production in mental health: a literature review. London: new economics foundation

13 years ago in a head & neck cancer service …

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Staff wellbeing & patient experience

http://www.aprilstrategy.com/infographic/

Co-design & healthcare quality improvement

• value in integrating human-centred tools and values of co-design into quality improvement approaches in healthcare organisations

Bate SP & Robert G. (2007) Bringing user experience to health care improvement: the concepts, methods and practices of experience-based design. Oxford; Radcliffe Publishing

• a co-design approach (Experience-based Co-design) as applied to quality improvement ‘work’ in healthcare services : https://www.pointofcarefoundation.org.uk/resource/experience-based-co-design-ebcd-toolkit/

The Experience-based Co-design process 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-centred 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): 1329-30

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EBCD combines: a user-centred orientation (EB) & a collaborative change process (CD)

Robert G, Cornwell J, Locock L, Purushotham A, Sturmey G & 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

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Patient narratives and touchpoints

• Critical points

• Big moments (good and bad)

• Moments of truth

• Emotional hotspots

Satisfaction ≠ Experience

Patient survey:

Q: Overall, did you feel you were treated with respect and dignity while you were in hospital?

A: Yes, always

Q: Overall, how do you rate the care you received?

A: 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.’

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

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Some typical touch points of head and neck cancer patients

Prototyping•move beyond talking and thinking about a

touchpoint to actually making progress toward action

•giving permission to explore new behaviours

• lots of different methods: can vary from paper sketches, to a physical model, to a fully acted out service (role play)

•make prototypes ‘early, ugly & often’; create something quickly, test it, and then iterate the design

•build buy-in from partners and other stakeholders

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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.

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 & Robert G. (2015) ‘Experience-based Co-design and healthcare improvement: realising participatory design in the public sector’, The Design Journal, 18(2): 227-248

What do patients actually do?

• sharing experiences (acting as source of expert, experiential knowledge through attendance &contributions at patient events)

• identifying priorities for quality improvement in their local services (attending the joint event with staff and first co-design meetings)

• developing potential solutions through working alongside staff (bringing innovative ideas and solutions as part of the co-design group work)

• helping to implement and evaluate these solutions (through ongoing engagement)

Boaz A et al. (In press) ‘What patients do and their impact on implementation: an ethnographic study of participatory quality improvement projects in English acute hospitals’, Journal of Health Organization and Management

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Developing & testing feasibility of complex interventions

Tsianakas V, Robert G, Richardson A et al. (2015) ‘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

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

An illustration: ‘My care, my voice’ in a learning disabilities service

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Humanising healthcareForms 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 & 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

In summary

• co-design/co-production represents a radical reconceptualisation of the role of patients & a structured process for involving them in all stages of quality improvement

• evidence is growing about the effectiveness of co-design/co-production approaches

• focus needs to shift away from collecting more data on patient experience towards embedding co-design/co-production mindset as a way of doing quality improvement ‘work’ in healthcare

Adapted from: Robert G, Cornwell J, Locock L, Purushotham A, Sturmey G & Gager M. (2015) ‘Patients and staff as co-designers of health care services’, British Medical Journal, 350:g7714

Further Reading• 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.

• Bate P, Robert, G (2007). Bringing User Experience to Healthcare Improvement: The concepts, methods and practices of experience-based design. Oxford: Radcliffe Publishing.

• Tsianakas V, Robert G, Maben J, Richardson A, Dale C, Wiseman, T (2012). ‘Implementing patient-centred cancer care: using experience-based co-design to improve patient experience in breast and lung cancer services’. Supportive Care in Cancer vol 20, pp 2639–47.

• Locock L, Robert G, Boaz A, Vougioukalou S, Shuldham C, Fielden J et al (2014). ‘Using a national archive of patient experience narratives to promote local patient-centred quality improvement: an ethnographic process evaluation of “accelerated” Experience-based Co-design’. Journal of Health Services Research and Policy. First published on May 19, 2014 as doi: 10.1177/1355819614531565.

• Springham N, Robert G (2015). ‘Experience based co-design reduces formal complaints on an acute mental health ward’. BMJ Quality Improvement vol 4 (1), pp 4.

• Donetto S, Pierri P, Tsianakas V & Robert G (2015). ‘Experience-based Co-design and Healthcare Improvement: Realizing Participatory Design in the Public Sector’, The Design Journal, 18:2, 227-248

• Robert G, Cornwell J Locock L Puroshotham A, Sturmey G, Gager M (2015) ‘Patients and staff as codesigners of healthcare services’. BMJ 10 February (BMJ 2015;350:g7714 )

• Van Deventer C, Robert G and Wright A. (2016) ‘Improving childhood nutrition and wellness in South Africa: involving mothers/caregivers of malnourished or HIV positive children and health care workers as co-designers to enhance a local quality improvement intervention’, BMC Health Services Research, 16: 358

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Further information

• EBCD toolkit: https://www.pointofcarefoundation.org.uk/resource/experience-based-co-design-ebcd-toolkit/

• EBCD LinkedIn group: www.linkedin.com/groups/Experiencebased-codesign-6546554

• twitter: @gbrgsy, @PointofCareFdn

• EBCD one day training course, team email: info@pocf.org.uk

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