The Diabetes UK Professional Conference: the power of research – by Charlotte Austin
Charlotte Austin (pictured far right) was one of the five Diabetes UK Professional Conference bloggers this year, and we asked if she’d like to guest blog for our Research blog, giving us her highlights. Charlotte has Type 1 diabetes and is a big believer in the power of research.
Science and research are amazing. Without the breakthroughs we’ve seen in the last century, life for people living Type 1 diabetes today would very different. Devices such as insulin pumps and continuous glucose monitors makes life that little bit easier. The developments of the last 24 years of my “diabetes life” have been pretty impressive: injections (syringes to pens to pumps), finger pricks (I won’t bother you with the details of the vicious prickers from the early 90s that caused a finger abscess and subsequent trip to A&E…), various kinds of insulin (mixed, basal glargine and insulin lispro) and the progress of glucose meters from ones that took a minute to count down to USB meters that can send glucose readings via Bluetooth. Mind-blowing!
We accept new treatments and technology once they’re presented to us, but do we really appreciate the time and intellect that goes into developing them? And how can we help ensure that important research carries on? Lis Warren, a person I look up to very much, is a huge advocate for getting involved in research – and I completely agree. Having participated in some clinical research work into exercise and Type 1 diabetes at Swansea University, I’ve seen how this involvement is often invaluable (personally and scientifically). That pretty much sums up why I was so looking forward to attending #dpc16 with the rest of the Twitterati (© Dr Pete Davies). In this role, I felt a huge sense of responsibility to feed back and disseminate the information as thoroughly as possible to the rest of the diabetes community.*
Education, Education, Education…
Day one started off with what I interpreted as being some pretty big news: the results of the REPOSE trial (Prof Simon Heller, Sheffield). Professor Heller and the team looked at comparing outcomes of people with Type 1 diabetes on insulin pumps vs multiple daily injections (MDI) if each cohort had an identical standard of diabetes education. They hypothesised that the reason pump patients (of which I’m one) generally have better outcomes is predominately down to the fact that they have more training and education compared to their MDI counterparts. So the study looked at the effectiveness of both forms of treatment if both groups received the same high-level of structured education. On the surface it might look like a pumps vs MDI study, but actually it’s so much more. The results were interesting: HbA1c outcomes for the group on pumps were just 0.36% better than those on MDI (I was shocked at how little this was), but the incidence of diabetic ketoacidosis (DKA) was also much higher in the pump group. However, severe hypoglycaemia rates fell and primary outcomes improved in BOTH groups. So if it isn’t just about whether pumps are better than MDI, surely the outcome of this study ultimately proves that education trumps all?
Diabetes UK recently launched a powerful campaign called Taking Control to ensure that every person with diabetes is given the opportunity to attend structured education. In the past, the benefit of education has been somewhat difficult to quantify. However, Professor Heller has just presented them with the figures that they require. And that’s why I love research!
Thinking about the psychological as well as the physical
It was encouraging to see and hear the topic of psychological care higher on the agenda of the clinicians (as well as by people living with diabetes) at the conference. It’s often the “missing link” in diabetes care and can have a huge impact on someone’s ability to manage their condition as effectively as possible.
Do you know about diabulimia? Do you know that up to 40% of young people with diabetes regularly omit insulin in order to lose weight? In a full workshop on practical approaches to managing disordered eating and eating disorders, Consultant Clinical Psychiatrist Jane Morris opened with a stark reality for the health care professionals (HCPs) in the room: “Disordered ‘eating’ behaviours, such as insulin omission, excessive dieting and binge eating, are more prevalent in adolescents with Type 1 diabetes” (Markowitz et al, 2010).
If you analyse the relationship that a person with Type 1 diabetes has with food, this isn’t so surprising. Looking at the nutritional value before you even begin eating, weighing everything, digging around the recycling bin for that wrapper you’ve just thrown away (which contains the nutritional information). It isn’t exactly “normal” behaviour. In the past I’ve (unfairly) accused my mum of over-feeding me as a child, but the fear of night-time hypos and subsequent seizures was a huge driving force behind that. So now I associate food with fear, anxiety and emotion. This seems to be a common theme amongst many people with Type 1 diabetes. In this case, raising awareness is the biggest step. Ensuring that the word is spread to every HCP is the next challenge.
In a move of pure genius, the Friday afternoon workshop combined both the physical and the psychological in a session entitled “Exercising mind and body in Type 1 diabetes”. Dr Mark Davies is a Consultant Clinical Psychologist based in Belfast, and he really does “get it”. He compared the approach that sports coaches take (process-driven) to the approach used by HCPs when engaging with their Type 1 patients (outcome-driven). A word that I’ve come up against recently is the reason why we should focus on process as opposed to outcome: variables. Mark’s explanation was backed up by Sam Brand who races for Team NovoNordisk (an all-Type 1 professional cycling team). Sam is coached to focus on his own training, his own race, and things that he can control. If he comes second, that’s often due to things he can’t control (a competitor who has a bit extra, the weather, bike malfunctions). So why, in Type 1 diabetes, are we “coached” to aim for a number and not much else? It is changing to a degree but the historic numbers battle is ingrained in the system and in the people. When Mark uttered the words “blood glucose results are feedback not failure” a lightbulb came on in my subconscious. If you’re looking at outcomes, constantly aiming for a very specific number, aren’t you just setting yourself up for failure from the start?
Hearing these often unspoken topics being discussed at a professional conference gave me confidence that the system is truly recognising the need for a whole-person approach. As this is a professional conference, non-HCPs aren’t permitted to attend (I won’t bore you with the compliance regulation details – another blog for another day). However, many HCPs who are engaged on social media credit the value that people actually living with diabetes bring to the conference. On my personal blog, I recently wrote about breaking down barriers. Those barriers between scientists, the general public, HCPs, and patients. To researchers: engage with patients. To patients: be proactive and search for research studies or ask your HCP. We achieve more and we learn more without the barriers.
The power of DPC 16: bringing people together from different backgrounds, with different agendas to learn from each other. The power of research: it doesn’t just have to be about the newest medication or device, it’s about finding the tools to make life for people living with diabetes that little bit easier.
*You can read all tweets and discussions by searching #dpc16 on Twitter.