Living with Diabetes, Leading with Impact: A Conversation with Ged Hall

November 14th marked World Diabetes Day - a chance to reflect on the realities behind this often “invisible” condition. To dig into what that really means, and how lived experience can help shape better research cultures, I virtually sat down with impact legend, cricket enthusiast, watch and pie connoisseur, and all-round great guy Ged Hall.

In this candid conversation - while doing my best Michael Parkinson impression - Ged shares his journey with Type 1 diabetes, the tech that keeps him going, and why remembering the human behind the data is essential for inclusive, impactful research. From awkward researcher approaches to practical tips for building kinder cultures, this is a must-read for anyone who cares about research and the people who make it happen.

Ged, let’s start with the basics. For those who haven’t had the pleasure of working with you - who are you, what do you do, and how did diabetes end up being part of your story?

I'm currently Head of Researcher Development in the Researcher Development and Research Culture Team in OD&PL. I've been at the university since 2011 and my researcher development specialism has always been in the area of research impact. I was diagnosed with Type 1 diabetes in 1996 in my mid 20s, after noticing the usual 4Ts - Thirsty, Toilet (needing to go a lot!), Tired and Thinner. Initially this was treated with insulin injections and latterly I have used various types of pump therapy. I have just moved to an Omnipod 5 system with a Dexcom G6 continuous glucose monitor for the diabetes researchers out there.

Now, diabetes is often called an “invisible” disability - but with a few gadgets and sensors stuck to you, the reality of managing it involves quite a bit of visible tech. What’s your take on that label, and how do people tend to react when they notice your kit?

Yes, it gets that label because it's not immediately obvious as a missing limb, but as you say I have two pieces of tech stuck to my body. The one on my upper arm (the Dexcom) is easily visible if I am wearing a short-sleeved shirt. You get the usual Britishness of noticing and then looking like you haven't. The curious - 'do you mind me asking'. You also get the, it's so nice to meet someone else with the condition. There's around 400,000 of us in the UK so it's not like it is rare but it's also quite a small minority out of 65 million. And finally you get the diabetes researcher and their reactions have been quite interesting and varied over the years.

You’ve had researchers approach you in all sorts of ways - some thoughtful, some a bit like cold callers. What’s the difference between being treated like a person and being treated like a data point, and why does it matter for research impact?

Yes, I'd say the reactions from diabetes researchers tends to fall into two camps 1) they really want to chat on a human level about the condition and how I find it and 2) they have decided I fit their inclusion criteria and they need another person for their latest trial. Remember I have been diabetic for the whole of my career in higher education that started in 2003, so there have been quite a few of these interactions over the years. Sometimes people from the first camp do mention trials etc. But they tend to talk about from a 'you may be interested in the trial' not 'you are ideal to be part of the trial'. The second camp can make you feel like a data point and that really puts you off. If they don't care enough to treat you like a human, will they care enough down the line in the trial and have they really thought through the ethics of all of this or just treated ethics review as a tick-box. I have taken part in trials, I'll leave the reader to guess which camp has tended to be most successful with their recruitment. Now the thing to point out is that I care about impact from research generally - it is why I love my job and is a deeply held value and I care deeply about impact from diabetes research. So, for me to turn down being a participant on a trial does say that you have made the approach in a completely terrible way.

You’ve got a foot in both camps - living with diabetes and working in research impact. How do you think understanding disability and lived experience can help us build better research cultures? (And maybe stop researchers from accidentally being a bit awkward.)

I think the message for research culture and for all of us who experience it daily and for those who interact with it irregularly (like participants and other interested parties) is that we all need to remember the human there in front of us. We all need and should deserve to be treated that way, not as a labelled identity with the pre-conceptions that may come with that label. And as human we have agency, just as I can and do say yes or no to an approach to be a participant that agency needs to be respected and acknowledged. Those who have fallen into the second camp, are quite often surprised the most when I say no as they seem to expect me to be grateful that I was asked to participate and the huge amount of research they are doing on my behalf.

Finally, if you had one tip for improving local research cultures - or for being a better colleague to someone living with diabetes - what would it be? Bonus points if it’s something we can all do without needing a policy document or a committee.

I've said it a few times but get to know people on a human level, that is where the rich complexity exists and from that complexity and mixing it together comes real community. All beneficial change is built on that.

A huge thank you to Ged for being so generous with his time and insights. If you’d like to learn more about diabetes and World Diabetes Day, visit diabetes.org.uk.