Improving health care services through Experience-based Co-design

By Glenn Robert and Annette Boaz

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.

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.

Evaluation

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.

References:
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).