For the past four years I've been invited by Abbott to a conference bringing together people with diabetes from across Europe to discuss various topics. The first year I was meant to attend, it was my 'man v horse' year (the horse won!), so was unable to attend and then the pandemic hit so two further dX's were held virtually. I was fortunate to be asked to present at last year's session. This year's event was back in-person and held in Barcelona, coinciding with the latter part of the ATTD conference.
At this point, I must make it very clear - Abbott invited me to the 2022 European Diabetes Exchange forum (dX), that took place in Barcelona. I attended this two-day event to connect and interact with inspirational and influential people in the diabetes community. Abbott paid for my ticket and accommodation. #InvitedbyAbbott. This is formal and it needs to be - I have not been required to do anything by Abbott as a result of my attendance and I hope that my transparency enables the output from the conference to be viewed as my opinions formed out of discussions with some awesome people, not coming from a corporate entity. There were 30 delegates from 9 different countries, including 6 from the UK. This is about working together and leading the conversation - Abbott facilitates this, and I am very grateful and feel privileged to have been selected to attend.
So, with the boring (but important) stuff out of the way, I'll briefly summarise what we got up to, hopefully not too much in the primary school style - "What I did on my holidays"! - and go onto try and distil the overall themes and outputs into something that people can take forward to make the lives of people with diabetes better. After all, what better outcome is there than that - apart from a cure!
The Conference
Running over two half days, plenty of ground was covered, many perspectives sought and received as well as friendships formed and solidified. Abbott had engaged a range of speakers - I'll briefly summarise the sessions to give people a sense of what happened. I didn't make notes as I went along as I was so engrossed in the content.
Day 1
Being in Spain, it was appropriate the first session was run by the "Spanish Influencers", who introduced themselves and set us immediately to work with a Kahoot quiz checking that we know a little about the country and city we were in. To be fair, we did OK, but I was certainly interested to learn that Spain have only won the World Cup once (in 2010...how could I forget that?!).
The second main session was titled "Emotional well-being and stigma". This theme is heavily discussed in both the diabetes sphere and throughout healthcare and beyond. We had two brilliant speakers to take us through this most challenging of subjects. Wendy Smith spoke about her experience of having a life-changing injury in her teens and how, with family support, she was able to confound the medical profession and achieve great things. She spoke about how she moved past the stigma of being 'disabled' and cope with the stares, comments and prejudices associated with disability. She was followed by Professor Deborah Christie of UCLH, who highlighted the importance of language (a pet topic of mine!) and the impact of stigma.
A session then followed about the Metaverse, with the projected speaker being unavailable, this was delivered remotely. I'm not sure I fully-subscribe to what the person was speaking about. His vision was that the metaverse (basically online worlds of interaction) would soon be used extensively in both business and personal settings. My view is that this has already been tried and proved not to be popular. I attend many online meetings, where it is becoming increasingly rare for people to have their cameras switched on. I'm not sure I understand why, but the fact remains that we are operating meetings as basic conference calls, the same as the ones we held in the late 1990's. I therefore don't see a significant thirst to change to more advanced technologies and I don't think that AR and VR are going to be the standard tech that people use to interact. That said, when the iPad was first released, I didn't think there was any point to that either...so I'm hardly visionary in this area!
The final session of the day was delivered by some Abbott leaders talking about the future, although having to be quite coy about it due to Spain's regulations around marketing of medical devices to non-professionals. Understandably, there wasn't much new information, but it was great to have the ear of some Abbott leaders, especially discussing interoperability of Libre with other systems. As stakeholders in Libre and other diabetes tech, the community are certainly maintaining pressure on organisations to understand how important this is to the future of tech.
Later in the evening we were treated to a traditional Spanish dinner, before making our own way to the local Irish bar, which is always a reliable place for a good atmosphere and plenty of people - Barcelona's Irish bar certainly didn't disappoint. This Irish bar may have been the reason for the slow start to Day 2...at least for some people (names withheld for legal reasons!!)
Day 2
The organisers had arranged for a local ex-UK running coach to lead a session leaving the hotel at 7am on Day 2. Plenty signed-up for a run down the wonderful beach-front of Barcelona. Rather fewer made it to the coach. Whilst running is beyond me, in part due to my aforementioned leg injury, and partly because I've not run in years, I opted for a brief 45 minute walk. An energetic four of the group participated in a gentle run in very pleasant weather and should be commended on their commitment. I watched disappear into the distance whilst dodging the detritus of the night before's partying - the clubs had only recently shut. On return to the hotel, there were various excuses for non-attendance, some more plausible than others! Well done to those that made it - morning exercise was definitely necessary owing to the magnificent selection for breakfast!
The second day's sessions picked up the pace and certainly provided plenty of discussion points and potential future actions. The overarching them of the sessions were about reducing stigma and understanding diabetes superpowers. The first speaker was Dr Barry Fitzgerald (@BarryWScience) - "superhero scientist, speaker, author, YouTuber and enthusiastic communicator"...what this résumé doesn't include is Marvel movie superfan.
.jpg)
Certainly from my daughter's perspective, this caused much excitement and kudos directed towards him. However, even if knowledge of Marvel was limited, Barry brought the subject matter to life in the most engaging way. The thrust of his discussion was that Iron Man's superhero abilities were because of his suit. However, the particular superpower was not what most people might assume - the ability to enable Tony Stark to fly, but actually it was the biosensors contained in the suit that were the true enablers of Ironman's abilities. Not only that, he went on to explain that in the films, Tony Stark at first kept his palladium poisoning issue to himself. He tried in vain to solve the problem alone, but it wasn't until he allowed others to assist him, that he managed to control the poisoning. In addition, those allies didn't point or stare at him, or even question why he needed to monitor his various vital signs; they helped him without question and without prejudice. There are obvious parallels between the lives of those living with diabetes and the Ironman series.
Happily, that wasn't the last we were to hear from Barry, with the final session of the meeting facilitated by him. In the meantime there were two further sessions. Firstly, the Spanish delegates returned to present about work they were completing. In particular there was a focus on leadership in Type 2. The Spanish group are fortunate not only to have great advocates and leadership, but also to have support from Abbott Spain to change the agenda and ensure that those with Type 2 diabetes are as well represented as their Type 1 counterparts. I think there is much to learn from the successful collaboration between advocates and industry.
The next session was presented virtually by Lionel Reichardt, someone who had presented at dX previously. He has wide knowledge of healthcare tech and barriers to access. He presented interesting statistics on access and gave a good foundation for the final session where delegates were split into four groups each tackling an important problem facing not only diabetes but also healthcare provision in general. Facilitated by Barry, a short but informative discussion was held on the topics. The output of the session - our "call to action" - is summarised in the table below.
HCPs - Healthcare Professions - nurses, doctors, physios, pharmacists, psychologists etc,
I will discuss these and other take-home messages in the final part of this review.
After the session, we all went our separate ways. I headed back towards ATTD meeting up with 'old' friends before walking across Barcelona (my phone tells me 14 miles!) walking the length of Las Ramblas before taking the funicular and then the cable car up to the largely-abandoned 1992 Olympic park and beyond. Finally, I closed the day and my stay in Barcelona in non-traditional style at a KFC with a new diabuddy and his family - more on that later.
My Outcomes
I had a thought-provoking couple of days in Barcelona, meeting great diabetes advocates from across Europe and discussing all things diabetes. For me, the final session distilled all that we had heard into something that we can take forward and hopefully help to change attitudes and improve outcomes for many people living with all types of diabetes. The four topics chosen in that session were split between different groups, so I could only contribute directly to one. However, I think it's worth reflecting on all of them.
Improving Health Literacy
Health literacy is fundamental for everyone living with diabetes. However, it lacks focus and is rarely well-delivered in a structured and accessible way catering for the requirements of those with diabetes. The burden generally falls upon over-worked doctors and nurses who not only have to get a patient through the technicalities of diabetes management but also ensure that the person understands what they are doing. There was a great example given from Spain where Abbott has partnered with people living with Type 2 diabetes to support them in getting better information to patients. Peer support is a common theme across all these topics - authorities need to stop paying lip-service to the transformative potential of peer support and stop viewing it as a threat not an opportunity. Safeguards could be made and the support regulated, but to dismiss it, as I so often hear is the case, needs to stop if we are to make the changes in this area that are so needed. The model of partnering with business to deliver this has the potential to drive this change - we have the skills, we may have the finance, now it needs to be delivered.Harnessing New Technologies
Interestingly none of the groups talked about funding as the key issue in this topic. In the rarefied atmosphere of social media, it's easy to think that funding would be at the top of the agenda. I agree with the group - education disparity and information flow are far more important. Do people with diabetes know about the technology available? Do the HCP have the skills, time and freedom to best recommend the tech that is adopted. Are there clear lines of communication between HCPs, patients and tech companies. This weekend may demonstrate that the latter can happen, but is it consistent and is it effective? I'd add in the UK situation where there's a disconnect between decision-makers and HCPs charged with managing people with diabetes. If we truly want to close inequalities and ensure the most appropriate tech is both harnessed and supplied to those in most need, there must be a better way. I will continue to scrutinise this area as I have for the past 5+ years, demonstrating why the system is not working in the UK and campaigning for change.Building Communications both Online and Offline
As the team working on this question so correctly concluded, this element relies on peer support. Peer support can seem rather ethereal and means different things to different people. It also scares those in healthcare leadership positions. However, the time has certainly come to change those opinions and find a way to deliver proper peer support. Health authorities don't have the resources to deliver support to all people with diabetes. The only way that support can be achieved is through effective peer support. As the group suggests, this starts with peer to peer coaching from diagnosis until the person is self-sufficient and can find appropriate support by themselves. There are many platforms that can be used to provide this support, but as it stands there is a lack of structure. I have long advocated an apprentice-like structure to diabetes education and support - indeed a similar structure was presented at ATTD
AID - Automated Insulin Delivery
I'd argue that this doesn't only apply to AID training, but to all diabetes tech use. If we start treating the education and peer support of people with diabetes as a cumulative process starting at diagnosis then a defined structure can be created. Currently, so much focus is on cutting-edge tech, that the foundations seems to have been forgotten, or at least given low priority. Overcoming Stigma and Empowering Others
The group I was a member of tackled this tricky question. Peer support once more came up, and again the focus was on making it happen early, ideally from diagnosis. The second point was about HCPs. How much training do HCPs get in use of correct language and avoiding stigma (even if unintentional). My experience is nowhere near enough and certainly not early enough in their training. Their training should start at undergraduate level and include those living with diabetes. I think the same applies for training in other conditions - indeed generic language training might be appropriate at the early career stage. I have presented about the importance of language to various groups of clinicians at various stages of their careers. They all seem very engaged with the topic and seemed to have had little exposure during their training. I was only presenting because of a contact with an enlightened lead clinician - it wasn't a formal part of the training plan.
I think it is critical that the HCPs involved with diagnosis and those first conversations with the newly-diagnosed must have appropriate exposure to PWD and training in best-practice language. I remember the first conversations about my diagnosis, with the GP, the DSN and the specialist. I can almost remember every word. Their words stick with me, and whilst they weren't bad, they could have been so much better. If those words had been less carefully chosen with a more vulnerable person, for example a parent of a newly-diagnosed child, I have no doubt that the negative affect on everyone involved with that person and their care with the words affecting them for years to come.
An Appy Ending!
As an aside, I connected with various people during my time at dX. Of particular interest was Davor and family from Croatia. As well as being a really nice guy, full of passion for making the lives of PWD better, he also has some top technical skills. He and his wife have created an app. This app uses geolocation to show whether there are other PWD in a radius and gives an option to message them. The main use was if there was an emergency, for example if they've forgotten test strips, then someone in the locality may be able to assist. I actually think the power of this app is to create communities in an area and provide peer to peer support through a safe messaging solution. I look forward to seeing future iterations of the app - watch this space; I think it has a bright future.
Final Thoughts
It was great to speak with so many engaged and pioneering people in the diabetes sphere. I am grateful to Abbott for supporting us in coming together to discuss the important topics facing people with diabetes. It is heartening that those with some degree of influence may be able to push forward to care of everyone with diabetes and we must keep up the momentum of the 24 hours we had together. A pan-European solution to peer support could be achievable as well as the foundations of diabetes education. Whilst some may be reticent of the long arm of 'big pharma', we can't achieve all that we need alone. We are better together, supporting and growing the effectiveness of the support for all with diabetes. The weekend demonstrated that progress has been made - we are fortunate to be in a position to influence the agenda, so we need to make our voices heard and make the changes for the benefit of all.
Pricks Official Farewell Tour - 5th May - 22nd June 2022
Starting in Mansfield and going to Leicester, Helmsley, Crawley, Portsmouth, Yarm, Cheltenham, Boston and finally Darlington.
Please support Jade in her important work.
Comments