Using patient stories to transform services

This month The King’s Fund will launch an updated version of our experience-based co-design toolkit. Joanna Goodrich, Fellow at The King’s Fund, explains why it can be such a powerful tool in improving patients’ experience of services.

On a large screen, a woman tells her story of being diagnosed with cancer. She describes what the waiting room was like, how she felt when she was called in to see the consultant, and the way in which he broke the news – the details of the experience that stick in her mind.  The audience, watching the film intently, is made up of staff and patients from across the care pathway, including the consultant and the woman herself. 

This patient–staff event is a crucial step in a groundbreaking approach to health care quality improvement called experience-based co-design (EBCD). Originally developed with support from the NHS Institute for Innovation and Improvement, the approach includes filming patients’ responses to their care and then bringing patients and staff together to watch and discuss the films. They then work alongside each other in small groups to develop and implement improvements to overcome the problems highlighted. 

‘A number of things are unique about the EBCD approach,’ explains Joanna Goodrich, Fellow at The King’s Fund and the project co-ordinator. ‘The patient–staff event has a huge impact because the films bring the patient experience to life in a way that a survey or audit cannot do. Staff often become quite emotional, saying that the experience helps them reconnect with the reason they chose to work in health care in the first place.’

For patients, the experience is very empowering. ‘The process is very positive and forward looking, focused on developing practical improvements,’ says Joanna. ‘Unlike the experience of filling in a survey, with EBCD patients see their own feedback transformed directly into concrete change.’ Staff are often surprised at the simplicity of some of the changes requested – examples include providing blankets in cold examination rooms, or explaining more clearly what will happen next.

Since 2011, many teams have relied on The King’s Fund online EBCD toolkit – a step-by-step guide published in 2011 as a collaboration between King’s Health Partners Integrated Cancer Centre and The King’s Fund Point of Care programme. One team described the resource as ‘an essential tool to guide us through the process’. This autumn the Fund is launching a revised version to add new learning gathered from more than 60 EBCD projects and toolkit users’ feedback. 

‘EBCD is still a comparatively new approach,’ explains Joanna. ‘When we produced the first toolkit, the guidance drew mainly on the experience of our work with King’s Health Partners. Since then, many more health care organisations have used the approach: at the last count, in at least seven countries, by services including mental health, A&E, palliative care and surgical units.’

 ‘It includes new learning as people gain more experience in the approach and recent research, strengthening the evidence base,’ she adds.

As more sites have used the approach, there have been more opportunities to test its flexibility, so the revised toolkit shows how organisations have applied EBCD to the needs of their patient groups.  

An important variation is the development of an accelerated version of EBCD, which uses existing ‘trigger films’ – patient films selected from the extensive archive at Oxford University’s www.healthtalkonline.org – in place of the new patient interviews.  An evaluation funded by the National Institute for Health Research in two lung cancer services and two ICUs found that this adaptation did not lessen the impact of EBCD. This means that EBCD is a possibility for services with limited resources as it eliminates the need to film and edit new patient stories.

The revised toolkit will be launched at The King’s Fund’s sixth Transforming patient experience conference on 6 November 2013.