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2. Is experience-based co-design for you?

Experience-based co-design (EBCD) is a different approach to service improvement because it captures the experiences of patients, carers and staff through discussion, observation and filmed interviews.

Gathering information about patients’ experience is not new – but it is usually done through audits or surveys, which can be unsophisticated tools for discovering what really matters to patients. By enabling patients and service users to tell the stories of their experiences from their point of view, EBCD often reveals unexpected areas for improvement that can be surprisingly simple to overcome.

In this approach, patients and staff work alongside each other to identify problems that can be practically overcome and to develop implementable solutions that benefit everyone. The result can be long-lasting change that genuinely makes a difference to patients’ experience, along with many wider benefits that result from participating in a revealing, challenging and inspiring collaboration.

The growing evidence base

  • Recent research, including a rapid evidence synthesis shows that EBCD projects:
    • achieve changes in services
    • achieve positive outcomes for patients
    • achieve sustainable change
    • The codesign process is motivating for staff and engaging for patients
    • The codesign process can be adapted to different settings
    • Projects  achieve sustainable change
  • In an international survey in 2013, 37 of the 41 respondents who had completed an EBCD project said that the approach ‘really engaged patients’, 32 said ‘it really engaged staff’ and 26 said ‘it allowed discussion of difficult topics in a supportive environment’.
  • The National Institute for Health Research in England described the accelerated EBCD project (see Section 15, Adapting the approach to your budget and accelerated EBCD) as ‘an exceptional work which has… served to restore [people’s] faith in the power of applied qualitative research to shape both real knowledge production and beneficial change in the organisation of service delivery’. Another review described it as ‘a model of qualitative research excellence that is applicable to the lives of patients, carers and professional staff’.
  • One evaluation of an EBCD project across two large NHS trusts found that 19–22 months after the initial implementation of 56 co-design solutions, 66 per cent had been sustained.
  • A follow-up evaluation in Australia exploring the impact of EBCD two years after implementation reported that ‘Co-design has been shown to strengthen service provider–service user relationships’ and ‘the primary strength of EBCD over and above other service development methodologies was its ability to bring about improvements in both the operational efficiency and the inter-personal dynamics of care at the same time.’
  • A feasibility trial that used EBCD to support carers of patients undergoing outpatient chemotherapy found that the co-designed intervention had significantly enhanced carers’ knowledge of chemotherapy; significantly reduced unmet needs for information and support; and significantly enhanced experience of, and satisfaction with, care.
  • An independent evaluation of an EBCD project at Guys and King’s said that as well as making specific changes to various aspects of breast and lung cancer services, the EBCD project supported wider improvements, including helping to establish a wider culture of patient involvement and facilitating greater and more open team working and better communication across departments, clinicians and staff of different grades.

Key points

  • EBCD is a very straightforward and flexible approach that can lead directly to action and genuine improvement.
  • EBCD offers an opportunity for dialogue that provides rich insights into the nuance and meaning of patient feedback and can complement other feedback methods, such as surveys and audits.
  • EBCD can help organisations meet strategic objectives within the quality agenda, including improving patients’ experience and involving patients, and engaging large numbers of staff in service improvement.
  • There is a growing body of evidence of effectiveness of EBCD as an approach to improve patient experience. (see EBCD toolkit further reading)
  • Ensuring genuine patient involvement can be a challenge in the face of competing demands. This approach brings the patient voice to the heart of service development in a way that helps staff feel inspired and motivated to make and sustain the changes.
  • EBCD is a fresh approach that moves service improvement discussions away from the usual topics, to reveal the often hidden factors shaping patient experiences – for example, it might identify that the most frustrating aspect of long waiting times relates to poor communication rather than the wait itself.
  • The approach focuses on solutions that patients and staff develop together, to produce realistic goals that will benefit staff and patients alike.
  • Patients provide both positive and negative feedback through a constructive, collaborative process that participants often describe as motivating and inspiring. This reduces the challenges of receiving feedback that may be critical.
  • The two-way process develops connections across staff teams and between staff and patients, and can boost confidence and motivation levels.
  • Because patients are involved throughout the development process, EBCD offers the opportunity to check back with patients to make sure that the changes made succeed in improving patients’ experience.
  • Importantly, the approach involves patients and staff working together to design and make improvements to their services.
  • The approach can easily be adapted to encompass the views of carers too.