Here’s my new illustration covering some key factors for you to consider when trying to include people with lived experience in improvement work.

All improvement projects in healthcare that are created for the purpose of improving patient care, patient outcomes or patient experience should be created in partnership with patients and the wider community. People with lived experience should be in the project team, leading and advising on changes and using their voice to help make sure improvement truly meets the needs of those it is intended for.

Yet we are so far away from this being a reality.

I have often struggled to include patients and the community in projects I did. I know the value, the need and importance but still I struggled. It can be difficult to achieve if the right culture, structures, and enablers are not in place to allow it to happen easily. It can be complex if the true value of lived experience is not recognised. You can feel nervous and anxious if you aren’t taught the right skills and approach to have when engaging with them.

True inclusion and co-production with patients and the wider community is complex and requires more than just a tool/method to use.  

There are so many benefits from including people with lived experience in improvement work. We need to put the effort, time and support into making it a reality for all projects – not just some projects on the outskirts of healthcare. Here are some benefits:  

Learning from their experience

Learning from lived experiences leads to better quality services that are more responsive to patient needs. Experience, stories and emotions can only come from one place and that’s the people who use healthcare. It keeps us connected to the core purpose of WHY we are doing it.  

Creating a better understanding

Through the inclusion of lived experience, we have a better understanding of behaviours, needs and perspectives which helps us challenge our own thinking and judgement. It allows us to view through their lens and feel with them.   

They see the gaps

We cannot understand the vast diverse needs of the wider community through our own eyes alone. We miss vital things or overlook the impact some changes will have on different parts of the community. We often talk about design “with the patient in mind” but that’s not enough, patients need to present – not just in our mind.

Our view is blinkered

We know there are major disparities in healthcare services for people from disadvantaged backgrounds and that’s because of us! Our perspective, ignorance, bias and lack of understanding can mean our improvement efforts might not have the desired impact on all parts of the population. Involving people with lived experience right from the start can help ensure we think wider beyond our own perspectives.

They keep us grounded

Improvement has become complicated with “buzz words” and “healthcare speak” which detaches us and we forget the patient is a “person” Our language in healthcare is a major barrier to compassionate and patient centered care. Involving people with lived experience can help us to stay grounded, focused and attached to what matters most – the patient.

Perspectives

In healthcare we are in a professional role and view things from this perspective.  Patients bring a totally different perspective – they are not bound by healthcare rules, roles or culture. If you want improvement that’s innovative, transforming and successful – you need diverse perspectives included in it.

We often use “patients” in a small part of an improvement project – maybe through some patient feedback, data or interviews. People with lived experience should be involved in all parts of the project from start to end. There are some wonderful examples of it happening in healthcare but we are a long way from making it normal practice for improvement projects.

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