Experience based co-design

In this blog we’re going to be taking a look at experience based co-design (EBCD). It's a really important and relatively new improvement methodology which is used to support services and solutions in becoming more patient-centred, by working collaboratively with patients and families.

What is experience based co-design?

The Kings Fund are pioneers of this improvement methodology. They describe experience based co-design (EBCD) as an approach which: ‘enables staff and patients (or other service users) to co-design services and/or care pathways, together in partnership.’

We would recommend having a look at the Kings Fund EBCD toolkit at the Point of Care Foundation website. Along with the toolkit itself, it sets out detail and examples of the methodology, as well as detailed steps on how to embark on your own experience based co-design project.

Essentially an improvement project, experience based co-design was initially designed within the NHS, with the first example in 2007.

EBCD uses interviews, discussions and videos with patients and healthcare teams to discuss care and experience of care. The output from these interviews is a short film which is then shared with teams and patients and families to review, work on and identify activities that will help improve the care pathway.

Described as a ‘user-centric design technique,’ ECBD draws on QI techniques that have been used across the healthcare space, with a particular focus on drawing on patient and user experience to guide change. The ECBD has been used in the NHS to audit and review a range of clinical services with great success.

The book ‘Bringing user experience to health care improvement: the concepts, methods and practices of experience-based design,’ by Bate and Robert (2007) shares the methods behind EBCD, and features a case study of head and neck cancer patients, carers and staff in an acute hospital in the south of England.

Catherine Dale, programme manager for patient-centred care at King's Health Partners Comprehensive Cancer Centre says that 'EBCD gives teams a framework within which they can work together to identify how experiences can be improved for patients, their family and staff.'

To find out more, take a look at this Kings Fund video, which also talks you through experience based co-design.

Impact of the EBCD

Although EBCD is a relatively new – and qualitative – methodology, there is already evidence on its positive impact in healthcare.

Let’s take a look at the Oxleas Mental Health Trust case study which forms part of the EBCD toolkit.  The trust used EBCD methodology in 2012 to improve its impatient service, to create a more effective treatment and less traumatic patient experience which would lead to shorter stays and fewer readmissions. This led to complaints being reduced by 80% over the 14 months.

The trust acknowledged that while being admitted to hospital can be stressful - being admitted to a mental health ward can be even more so. This is why the team wanted to make improvements to the process using the experience based co-design process.

Art therapist Neil Springham explains: ‘We wanted to find a way of closing the circle – asking for patient experiences but then delivering that information back in a way that led to positive, concrete changes.’

After having gone through the EBCD process, the positive impact was felt by both staff and patients. It meant that the trust changed their triage system to a more patient-centred model of care, which was more aligned with what service users needed. The Care Quality Commission highly commended the project.

The two key components of the methodology (experience based and co-design)

Let’s take a look at the Kings Fund piece which very succinctly describes the two elements of experience based co-design as enabling ‘staff and patients (or other service users) to co-design services and/or care pathways, together in partnership.’

Experience based

The ‘experience based’ element of the methodology very much draws on the lived experience of patients and users to produce tried and tested results that will impact positively on patient-centred care. In EBCD, the patient or user is very much at the heart of the methodology, and vital to its access.

The Kings Fund go on to say: ‘People use many different terms to describe this area of work and don’t always agree about the exact meaning of them and how they are different to each other. Many of the terms – particularly engagement, participation, and involvement – are used interchangeably. This can be confusing, and it could be argued that this has slowed progress at times.’

Let’s take a closer look. EBCD was designed and developed to understand user experience. In business, if people don’t like a product or service, they will stop using it. However, in healthcare it’s more difficult as people will always need to use the services. ‘If we want to deliver really great services that don’t frustrate the people who use and deliver them, then we have to design the experience.’

Let’s take a look at the main stages of EBCD:

• ‘observation of clinical areas – gain an understanding of what is happening on a daily basis
• conducting open-ended interviews with staff, patients and families – exploring niggles and identifying recurrent themes
• filming and editing interviews of patients into 25–30 minute documents of themes
• facilitating meetings and activities with patients and staff (separately to begin with then together) to help move from individual to collective experience of the service
• in the staff feedback event, agreeing improvement areas staff wish to prioritise and are happy to share with patients
• in the patient feedback event, showing the film to patients and agree improvement areas patients wish to prioritise
• holding a joint patient-staff event to share
• running co-design groups to meet over 4-6 months to work on agreed improvements
• celebrating the achievements of co-design groups and initiating new improvement work.’

All these elements require lived experience, from both the people who conduct and facilitate the activities, as well as the patients or service users.

The ‘experience’ side of EBCD is described as: ‘To make co-design a reality, we need systems, organisations and communities to embrace the leadership and contributions of people with lived experience. Doing that requires different ways of thinking and being, which are missing from many teams, organisations and systems.’

Lived experience is the key word here. We can all learn from people with lived experience.

‘Experience-based co-design’ by Greenhalgh T, Humphrey H, Woodard has a great chapter on User Involvement in healthcare which describes a number of different ways in which staff worked with service users to learn from users’ experiences and co-design improvements.

Co-design

Let’s take a look now at the ‘co-design’ element of EBCD which is ‘.. about challenging the imbalance of power held by individuals, who make important decisions about others’ lives, livelihoods and bodies. Often, with little to no involvement of the people who will be most impacted by those decisions. Co-design seeks to change that through prioritising relationships, using creative tools and building capability. It uses inclusive convening to share knowledge and power.’

Co-design means sharing power and empowering. Acknowledging that often those with the most power have influence over decisions, and how this can change by using all to make decisions and design. This is a key principle in the co-design process.

All in all, EBCD is a really interesting and innovative QI methodology. To finish with the words from the Kings Fund on launching their EBCD toolkit: ‘We think the approach is so effective that we want to help others to replicate the successes achieved at the Integrated Cancer Centre.’