Experience-Based Co-Design: An approach that truly centres the voices of those with lived experience

Saira Nazeer, a critical care research therapist at Barts Health NHS Trust, writes about her use of Experience-Based Co-Design within her work supporting critical care survivors.

I work with critical care survivors to help improve what survivorship looks like for them. Working as a respiratory physiotherapist, I was often involved in supporting patients’ rehabilitation after a period in critical care when they would be on a ventilator. I became interested in what happens to patients after this stage and found that although we were getting them off the ventilators and out of critical care, their long term outcomes were often quite poor.

Although medical advancements mean more and more people are surviving a stay in critical care, most survivors are left with impairments affecting them physically, mentally, cognitively and emotionally, which for many can last long after they have left hospital. These impairments affect their ability to be independent with normal activities of daily living, and impact how they reintegrate back into society, including returning to work. In fact, 50% of people who survive a period in critical care are unable to return to work within the first year after being discharged.

There are services to support the recovery process after being discharged from hospital, but we noticed that many people experience barriers to engaging with these vital support services. This impacts their ability to recover.

I felt it important to work with critical care survivors, their families and carers and those involved in these support services, to co-design an intervention to support engagement with services once discharged from hospital. From talking with critical care survivors, I was struck by the emotion that was embedded throughout their recovery journey. We discussed the desire to get home, the acceptance of new normals and the frustrations of navigating care systems to get the much needed support. I felt that Experience-Based Co-Design really incorporated these emotional touchpoints into the process of co-design.

I undertook EBCD training during my pre-doctoral fellowship year. I was struck instantly by the passion that those with EBCD experience spoke of this method. This passion seemed infectious almost – you could see the group on the call light up and everyone got involved sharing stories and participating in activities. You don’t often see that with online teaching!

The discussions I had with my cohort really helped with my personal development, thinking about future projects and how I look at co-design. I am excited to be part of the community of practice to continue to hear insights and share my own and continue to develop as a clinical academic. I am now taking forward a lot of my EBCD training and applying it in my doctoral studies.

I think the main difference the methodology has made for me is that it has changed the way I think about co-design for any research project. The EBCD process adds structure and consideration to something that can sometimes feel like an addition to a project. Sometimes people want to just ‘do a bit of co-design’ – maybe resulting in some tokenistic community engagement. But EBCD works to truly centre the voice of those with lived experience.

If you are considering developing a service or intervention, then having those affected by the service/intervention involved in the development is certainly going to produce a more effective output. Learning about how to use EBCD has allowed me to explore a more comprehensive form of co-design, exposing me to different elements that I may not have considered otherwise. It has also provided a community to learn from and share insights and experiences going forward.

Learn more about our upcoming Experience-Based Co-Design courses here.