Working with patients to improve health services: Experience-based co-design in practice

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Part of Experience-based co-design toolkit

Can we really expect to improve services in a way that makes a difference to patients if we don't listen to their experiences?

The Integrated Cancer Centre for South East London took a radical approach to this question: by asking patients to tell their stories from the moment they were diagnosed until after their treatment had finished.

Lung and breast cancer patients described their journey through the stages of treatment, and as they talked, a researcher from King's College London filmed them.

These films were shown at an event where staff and their patients sat together to watch them – not easy, but a powerful way for patients to express the aspects of care they had valued, and for staff to hear what needed to change. Patients felt liberated by the films, able to fully express how their treatments affected them:

'I often feel that my experience isn't reflected on [surveys]…I want to tick a box that's not there and this gave [me] a chance to say what's actually happening.'

Staff were also interviewed, with most seeing the benefits immediately:

'Some of the issues feel massive and you think they cross boundaries of departments and feel like a really big mountain to move, but by bringing people together often there are fairly simple solutions that can have a big impact on patient care.'

Working together, the staff and patients went on to map the patients' pathways, highlighting 'touchpoints' – moments when strong feelings, both positive and negative, had been triggered. They identified what they wanted to make better, and established joint patient and staff improvement groups then and there.

The groups met regularly, looking at issues including: communication: 'I don't want to be left in the dark about what is going on'; diagnosis: 'It was like falling off a cliff... you should be able to speak to somebody immediately'; day surgery: 'I don't want to feel like I'm on a conveyor belt'; chemotherapy: 'Someone should sit down with you and explain what's about to happen to you'; and care after treatment: 'I don't want to feel dropped after my treatment'.

Some changes – easy and quick to implement – were made immediately, and by the time everyone met again at the end of the project more than 40 practical improvements were reported.

This approach to service improvement, known as 'experience-based co-design', has since been taken up, and in some cases adapted, by other cancer services in Guy's and St Thomas' and King's College Hospitals, and at the nearby Maudsley hospital. It has previously been tried and tested elsewhere – notably at Luton and Dunstable Hospital and has been adapted for health care from the engineering and design industries, where customers are routinely asked to help design 'user-friendly' software, mobile phone and hotel services, for example. Its power is in the way staff work directly with their own patients, from sitting with them to hear feedback, to joining together in working groups to bring about practical change. More evidence about the effectiveness of the approach is outlined in our evaluation of experience-based co-design.

We think the approach is so effective that we want to help others to replicate the successes achieved at the Integrated Cancer Centre. Our Experience-based co-design toolkit – launched today – gives a practical step-by-step guide to the approach. It includes videos from patients and staff, which really bring their experiences to life.

Take a look, let us know what you think, and share your own experiences of how care can be improved for patients.


Catherine Sorsby

retired teacher,
Comment date
14 August 2011
When you are recruiting patients, please would you make an extra effort to include patients that have disabilities? When I was having treatment for breast cancer I was amazed to find so many staff that didn't have any idea about my basic needs as a wheelchair user. Time after time my wheelchair was moved from my bedside and left out of reach and even out of sight. Staff didn't realise that if I was attached to a drip I couldn't walk about (unlike other patients) while pushing a drip-stand along - and many, many times they seemed totally unaware of my fears that something like lymphoedema could stop me using my wheelchair and leave me totally dependent on others for the rest of my life. My friends who have sight and/or hearing impairments report similar problems.

In addition to the lack of awareness on the part of staff, I also had to cope with inaccessible toilets and showers, dayrooms that were full of so much furniture (or junk!) that I couldn't get in, coffee machines that were sited in inaccessible corners, and noticeboards that were too high or were inaccessible because chairs were stacked in front of them. Add to that all the narrow doors, or heavy doors, or double doors that would have been OK if staff didn't insist on keeping one half of them bolted! I was fed up of finding that every able-bodied person thought the 'disabled facilities' were wonderful - when actually they were ****!
I could go on and on - but I'll leave it at that for now.

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