Improving health care services through Experience-based Co-design

Community member post by Glenn Robert and Annette Boaz

Glenn Robert (biography)

There is lots of talk about the potential of co-creation as an approach to improving public services, but what does it actually look like (and do) in practice?

We describe one specific approach that has been used extensively for improving the quality of health care services: Experience-based Co-design.

Key Features and Stages

Experience-based Co-design draws on elements of participatory action research, user-centred design, learning theory and narrative-based approaches to change.

The key features of Experience-based Co-design are that it:

  1. places patients at the heart of a quality improvement effort working alongside staff to improve services
  2. maintains a focus on designing experiences (not just systems or processes).

It has six stages.

Stage 1 involves establishing the governance and project management arrangements.

Annette Boaz (biography)

In stage 2 a wide variety of staff are interviewed about their experience of working within the service (non-participant observation also helps to contextualise and understand these experiences). Staff then meet to review the findings in order to identify their priorities for improving their service.

In stage 3 – which can run in parallel with stage 2 – filmed, narrative-based interviews are conducted with patients and carers in which they describe their experiences of care. The films are reviewed to identify significant ‘touchpoints’, which are the crucial moments, good and bad, that shape a patient’s overall experience. A composite 35-minute film is then produced, representing all the key touchpoints in the service. All the patients and carers are invited to a showing of the composite film, following which a facilitated group discussion highlights any different or emerging issues and an emotional mapping exercise is used to help patients share their reflections. Following this group work, patients vote on their shared priorities for improving the service.

In stage 4 the respective staff and patient priorities are presented at a joint event at which staff view the composite patient film for the first time. Mixed groups of patients and staff use the issues highlighted in the film, together with the priorities from the separate staff and patient and carer meetings, as a basis to identify joint priorities for improving the service.

In stage 5, patients and a variety of medical, allied health professional and administrative staff then volunteer to join specific ‘co-design groups’ (typically four to six groups) and work creatively to co-design and implement improvements to the service.

At stage 6, these separate co-design working groups  reconvene to discuss their work to date and plan the next, ongoing stages of the improvement process.

Piloted in a head and neck cancer service in England in 2004, Experience-based Co-design has now been used in at least seven countries in a wide range of clinical services. Adoption and implementation has been aided by a free to use and widely accessed online Evidence-based Co-design toolkit that was developed by practitioners for practitioners.


Independent evaluations of Experience-based Co-design as a process have been positive. For example Iedema and colleagues (2010) – exploring the impact of the approach in several Emergency Departments in New South Wales, Australia – concluded that it ‘enable[d] frontline staff to appreciate better the impact of health care practices and environments on patients and carers [and] engages consumers in ‘deliberative’ processes that [are] qualitatively different from conventional consultation and feedback’. Other process evaluations have highlighted shifts in staff attitudes and organisational culture alongside particular service improvements (Locock et al., 2014).

In addition to these process evaluations, outcome studies of Experience-based Co-design have also begun to be reported. For example, a co-designed intervention to better support carers of cancer patients receiving outpatient chemotherapy led to statistically significantly better understanding of symptoms and side effects, as well as information needs being more frequently met than amongst carers in a control group (Tsianakas et al., 2015). And, rare for co-creation processes in any sector, the impact of an adapted form of Experience-based Co-design is currently being rigorously evaluated in a large-scale, randomised controlled trial that is seeking to improve the psycho-social outcomes of patients attending nine community mental health centres in Australia (Palmer et al., 2015).

Where next?

Give these indicators of success, how can Experience-based Co-design be scaled-up and spread?

These issues are also the subject of on-going research. To give an example, we know that recommendations for the amount and frequency of physical therapy for stroke patients are not met. Studies show that inpatients in stroke units spend most of the day inactive despite a decade of ‘top-down’ exhortations via guidelines and protocols. And yet patients, carers and other stroke unit staff – not just therapists – could have more active roles in helping patients participate in and practise rehabilitation activities. We are involved in a study with two stroke units where Experience-based Co-design is being used not only to try to break this impasse but where the new co-created ways of working developed there will then be implemented in two additional units. In all four units the new ways of working will be evaluated using patient reported experience and outcome measures.

The processes inherent to the approach itself would also benefit from further investigation. One key issue is the extent to which Experience-based Co-design can facilitate power sharing between patients and staff. Another is whether, for example, it may in certain circumstances actually serve to increase rather than narrow inequalities, and if so, how to mitigate this.

We have offered a brief ‘look inside’ a specific co-design approach that has been applied for a decade in one particular setting. It would be great to hear about the experiences of others.

Iedema, R., Merrick, E., Piper, D., Britton, K., Gray, J., Verma, R. and Manning, N. (2010). Co-design as discursive practice in emergency health services: The architecture of deliberation. Journal of Applied Behavioral Science, 46: 73-91.

Locock, L., Robert, G., Boaz, A., Vougioukalou, S., Shuldham, C., Fielden J., Ziebland S., Gager, M., Tollyfield, R. and Pearcey, J. (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, 19: 200-207.

Palmer, V., Chondros, P., Piper, D., Callander, R., Weavell, W., Godbee, K., Potiriadis, M., Richard, L., Densely, K., Herrman, H., Furler, J., Pierce, D., Schuster, T., Iedema, R. and Gunn, J. (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, 5: e006688.

Tsianakas, V., Robert, G., Richardson, A., Verity, R., Oakley, C., Murrells, T., Flynn, M. and Ream, E. (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, 23, 10: 3069-80. Online (DOI): doi: 10.1007/s00520-015-2677-x

Further reading on Experience-based Co-design:
Bate, S. P. and Robert, G. (2007). Bringing user experience to health care improvement: The concepts, methods and practices of experience-based design. Radcliffe Publishing: Oxford, UK.

Boaz, A., Robert, G., Locock, L., Sturmey, G., Gager, M., Vougioukalou, S., Ziebland, S. and Fielden, J. (2016). 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, 30: 258-278.

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: 227-248.

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: 7714.

Biography: Glenn Robert is Professor of Healthcare Quality and Improvement at King’s College London. His research draws on the fields of organisational studies and organisational sociology and focuses on quality and service improvement in health care; in this context he studies the adoption and implementation of innovations in the organisation and delivery of services. He has an overarching interest in organisation development and change management that spans all three domains of health care research, policy and practice. His current interests include drawing on designerly thinking – and the design sciences more generally – and identifying, adapting and testing frameworks or methods that may help address contemporary challenges facing healthcare organisations. A particular focus of recent work has been on the ‘Experience-based Co-design’ approach which has been implemented and evaluated as an innovative approach in numerous healthcare services internationally. He is a member of the Co-Creative Capacity Pursuit funded by the National Socio-Environmental Synthesis Center (SESYNC).

Biography: Annette Boaz is a professor in the Centre for Health and Social Care Research at Kingston and St George’s Universities, London. She is a social scientist with research interests in research engagement, research impact and evaluation. She supports a number of initiatives aimed at increasing capacity for research use including the UK National Institute for Health Research Knowledge Mobilization Fellowship scheme and the UK Implementation Network. She is the Joint Managing Editor of the journal Evidence & Policy. She is a member of the Co-Creative Capacity Pursuit funded by the National Socio-Environmental Synthesis Center (SESYNC).

This blog post is one of a series developed in preparation for the second meeting in January 2017 of the Co-Creative Capacity Pursuit. This pursuit is part of the theme Building Resources for Complex, Action-Oriented Team Science funded by the US National Socio-Environmental Synthesis Center (SESYNC).

Six lessons about change that affect research impact

What do researchers need to know about change to help our research have greater impact? What kind of impact is it realistic to expect? Will understanding change improve the ways we assess research impact?

The six lessons described here illustrate some of the complexities inherent in understanding and trying to influence change.

#1. Research findings enter a dynamic environment, where everything is changing all the time

As researchers we often operate as if the world is static, just waiting for our findings in order to decide where to head next. Instead, for research to have impact, researchers must negotiate a constantly changing environment. In addition, everything is connected, meaning that it is rare for only one aspect of the environment to be affected; rather there are multiple knock-on effects.

Research findings therefore enter a swirling cauldron of change and it requires work to ensure they have impact. Further, in that swirling cauldron (the environment), change is not uniform. The rates of change in different parts of the environment are variable, as are the degree and direction of change. Some parts of the environment are moving rapidly, some slowly. Some parts of the environment are transforming dramatically, other parts are developing incrementally. Some parts are heading in the same direction, others are cancelling each other out. Change also varies in scale. It can affect one or more of individuals, communities, geographical regions and beyond.

To achieve and assess research impact, we need to accept and work with the inevitability and complexity of change.

#2. Stopping change from happening requires work

A corollary to the inevitability of change is that stopping change from happening requires effort. It is not the case that doing nothing will allow things to stay the same. If our research findings point to the need for conservation, perhaps of a species, an environment or an historical artefact, this will require action to be taken. Similarly research that points to the need for continuity in social affairs, political systems or individual behaviour requires intervention to combat the forces of change.

#3. Once something exists it can be hard to get rid of

For society to function effectively, many government and other agencies are built to be reliable, consistent and predictable. Indeed, as sociologists have shown, considerable effort goes into maintaining social continuity. As a consequence there can be considerable resistance to change. The resistance can be direct opposition or inertia that results from accumulated organisational structures, power bases and ways of doing things.

#4. Change does not necessarily lead to improvement

A consequence of the dynamic, highly interactive change environment is that much change is self-generating. This can be negative and maladaptive. On-going genetic mutation is an example. Most mutations do not bring benefit and many of those mutations are perpetuated, with only the most maladaptive dying out. On a social level, ‘progress’ (which can be seen as analogous to biological evolution) needs constant monitoring to look for self-generating negative aspects.

#5. Success is in the eye of the beholder

In human affairs, change is not value neutral and whether it is seen to be good or bad depends on the perceptions of those making the assessment.

#6. Any attempt to influence change can have unpredictable outcomes

The inevitability of change, the interconnectedness of what is changed and the various aspects of change dynamics discussed above mean that attempts to influence change usually have outcomes that are unpredictable.

Unintended consequences, unexpected events and serendipity are key dimensions of unpredictability. In addition, anyone trying to influence change cannot control the larger circumstances or context in which they are operating.


Laying out the complexities of the dynamic change environment highlights the challenges of achieving and assessing research impact. Researchers seeking to influence change are buffeted by a range of forces—some supportive, some hostile, some neutral—and even in the best circumstances unpredictable outcomes may occur. There is no sure way to negotiate a path through those forces and there are no guarantees of success. No consequences at all or adverse unintended consequences are always real possibilities.

Those assessing research impact must be sensitive to the realities of the cauldron of change—for example, that hard work and skill are not always rewarded, that luck may play a large hand, and that good intentions may be punished with bad outcomes.

What do you think? Does this resonate with your experience?

Further reading

These lessons are drawn from the insights on change of 18 disciplinary and practice experts, which are described in:
Bammer, G. (ed.) (2015). Change! Combining analytic approaches with street wisdom. ANU Press: Canberra, Australia. Online open-access at:

See especially chapter 20:
Bammer, G. (2015). Improving research impact by better understanding change: A case study of multidisciplinary synthesis. In, G. Bammer (ed.) Change! Combining analytic approaches with street wisdom. ANU Press: Canberra, Australia: 289- 323. Online at: (PDF 348KB)

A co-creation challenge: Aligning research and policy processes

Community member post by Katrin Prager

Katrin Prager (biography)

How does the mismatch between policy and research processes and timelines stymie co-creation? I describe an example from a project in Sachsen-Anhalt state in Germany, along with lessons learnt.

The project, initiated by researchers, aimed to use a more participatory approach to developing agri-environmental schemes, in order to improve their effectiveness. Officers from the Agricultural Payments department of the Sachsen-Anhalt Ministry for Agriculture were invited to participate in an action research project that was originally conceived to also involve officers from the Conservation department of the same ministry, farmer representatives and conservation groups. Continue reading

The ‘methods section’ in research publications on complex problems – Purpose

Do we need a protocol for documenting how research tackling complex social and environmental problems was undertaken?

Usually when I read descriptions of research addressing a problem such as poverty reduction or obesity prevention or mitigation of the environmental impact of a particular development, I find myself frustrated by the lack of information about what was actually done. Some processes may be dealt with in detail, but others are glossed over or ignored completely.

For example, often such research brings together insights from a range of disciplines, but details may be scant on why and how those disciplines were selected, whether and how they interacted and how their contributions to understanding the problem were combined. I am often left wondering about whose job it was to do the synthesis and how they did it: did they use specific methods and were these up to the task? And I am curious about how the researchers assessed their efforts at the end of the project: did they miss a key discipline? would a different perspective from one of the disciplines included have been more useful? did they know what to do with all the information generated? Continue reading

Should I Trust that Model?

Community member post by Val Snow

val snow
Val Snow (biography)

How do those building and using models decide whether a model should be trusted? While my thinking has evolved through modelling to predict the impacts of land use on losses of nutrients to the environment – such models are central to land use policy development – this under-discussed question applies to any model.

In principle, model development is a straightforward series of steps: Continue reading

From integration to interaction: A knowledge ecology framework

Community member post by Zoë Sofoulis

Zoë Sofoulis (biography)

Would a focus on ‘knowledge ecology’ provide a useful alternative to ‘knowledge integration’ in inter- and trans-disciplinary research?

My experience in bringing perspectives from the humanities, arts and social sciences (HASS) to projects led by researchers from science, technology, engineering and mathematics (STEM) has led me to agree with Sharp and colleagues (2011) that ‘knowledge integration’ is essentially a positivist concept, dependent on the idealist model of a unified field of scientific knowledge to which every bit of science contributed. Continue reading