During the World Health Assembly in Geneva in May, there was an interesting shift as the days of the meeting progressed. I am always on high alert about the language used at these meetings (remember the ‘adherence’ event last year?), and this year, there was a definite shift in the words used when referring to people with lived experience of the health conditions discussed in different sessions.

Lived expertise started popping up, used by session chairs and moderators. This didn’t just happen by chance. For some time now, bolshy advocates (hand raised and waving…bolshily) have been stressing that what people with lived expereince bring to the table is indeed expertise. No one else can do it, and it is an essential part of any discussion.

During one of the audience discussions, I made the point of highlighting the importance of framing what people with different conditions bring as expertise. I emphasised that there is no one else capable of bringing that perspective and knowledge. The following day the moderator from that session introduced speakers with diabetes as having lived expertise. One of my colleagues reached over to me and tapped me on the arm: ‘Look at that! She’s changed her language from yesterday’s session’.

This shift is reflected in the new Meaningful Community Engagement framework used at ALIGN-T1D, where there is the clear acknowledgement that lived experience is expertise. (Disclosure: I work in the Global Responsibility team at Breakthrough T1D, the secretariat of ALIGN-T1D). It’s not just a framework document – it’s genuinely embedded in the project’s work and governance structure, and similarly, more broadly throughout the whole organisation. Can I tell you the utter joy I feel when colleagues without diabetes are the ones spearheading this language change rather than it being the person with diabetes! I see them doing it not only deliberately, but because they mean it.

Lived expertise in the diabetes context

I think for some people with diabetes it might take time to come around to using the moniker ‘expert’. I wrote years ago about how some people feel the term ‘advocate’ is loaded, and how not everyone who engages in advocacy feels comfortable adopting the label. I imagine for those people, coming on board and referring to themselves as experts might be a stretch. I’m curious as to why, and I wish that the imposter syndrome or whatever it is that is holding them back disappears so they can recognise the skill and expertise they bring.

While everyone with diabetes has expertise in their diabetes, we also need to recognise that there are expertise and skills that are learned. If we genuinely want lived expertise to be valued in the same way as other forms of expertise, we need others to understand that too. Otherwise, we see tokenism flourish as ‘anyone with diabetes will do’

For example, my expertise as a diabetes advocate lies in the areas upon which I have lived experience and also laboured experience. (For more about the four Ls of experience, please see this incredible piece in Diabetologia last year, led by Linxi Mytkolli with contributions from other #dedoc° voices from around the world.) With that knowledge, I know that I absolutely have expertise in what it means to live every day with T1D: the relentlessness, decision-making, stigma, language, healthcare interactions and the countless ways diabetes intersects with the rest of life because I have lived that reality for decades and spent years examining and articulating those experiences through my advocacy and writing. I don’t have expertise in living with T2D, or T1D and experiences that differ significantly from my own. That’s why I say no far more than yes when asked to act as a community representative.

My work – my laboured experience – means that I bring expertise around diabetes language, stigma, peer support, community engagement, advocacy and strategic communication. I have sat on numerous advisory boards and steering committees and, over time, developed the skills and expertise to lead and chair these groups. After spending years of acting as organisation spokespeople, I have expertise in media engagement and messaging. If I was asked to lead the design a diabetes registry or epidemiological study, I’d say no – that’s not where my expertise lies.

The problem with recognising lived experience as lived expertise is that there remains the issue of tokenism. If people’s expertise and skill as advocates or advisers or community representatives are overlooked, and anyone with diabetes is considered suitable, then we diminish the expertise they bring. To be involved in decision-making and advisory processes means having the confidence to push back, to challenge assumptions, to ask difficult questions and to recognise and overcome the real and perceived power imbalances that often exist in these spaces.

I will always say that people with diabetes should be centred and involved in all aspects of diabetes, but perhaps the caveat to that there needs to be consideration to match the right person with the right expertise to the right role. And that shouldn’t be surprising. After all, we readily accept that executive leadership positions, policy roles and research leadership roles require specific expertise and experience. Lived expertise should be treated with the same respect.

Recognising lived expertise means changing the questions we ask about who is involved in projects, advisory groups and decision-making processes. Instead of asking, ‘Do we have someone with diabetes at the table?’, we should be asking, ‘Whose expertise do we need?’ and ‘What experiences, skills and perspectives are missing from this discussion?’. Those are very different questions, and they lead to very different outcomes.

It also means being prepared to invest in people. We would never expect researchers, healthcare professionals or policymakers to become experts without mentoring, support or opportunities to develop their skills. The same should apply to lived expertise. If we want meaningful engagement, we need to support people to build confidence, gain experience and develop the skills needed to contribute effectively.

Linxi and Renza: a couple of bolshy diabetes advocates with years of lived expertise at the End Diabetes Stigma Summit.