The Abbott diabetes blogger community Exchange, dXLisbon took place on June 21-23, with approximately 38 bloggers/advocates from 15 countries. See my disclosure at the bottom.
dXLisbon 38 bloggers/advocates from 15 countries
The theme of #dXLisbon was ARTS & TECHNOLOGY, which was inspired by the locations where the workshops and sessions will be held:
•Village Underground is a former industrial ground transformed into a creative, street art environment.
•Nova is a leading economics university, which combines contemporary architecture with innovative, forward thinking.
The “dX” events were created by Abbott Diabetes Care to facilitate the exchange of ideas within the diabetes blogger community hence, Diabetes Community Exchange or “dX”. This was the fifth European dX and my third, having been introduced to dX in 2017 Amsterdam (dXAmsterdam). I wrote about that experience here and last years dXDublin here.
I’m afraid my flight arrived late in the evening, so I missed the presentation from the Portuguese Young Diabetes Association and after 15 hours of travel, I arrived at my hotel asking myself why do I agree to attend these events? I don’t get paid to do it and there’s a slim chance that I could possibly benefit financially from it in the future. I don’t even use any Abbott products! Others also question my motives and my integrity in attending claiming that it makes me now very different from the average person with diabetes and will affect my community negatively. Pfff, anyone who knows me will definitely say that I’ve never been one who has conformed to the average because of my endless quest for knowledge on diabetes care outside the confines of social media.
So, As I write this on Sunday evening, waiting in another airport, I can answer my question.
Benefits of being there vs Virtual Conference:
More information through casual conversation without 240 character limitation and the effort of typing/tapping.
Online communication is great and does connect people who would not be connected otherwise. But nothing will ever replace face to face when it comes to communication in my opinion. I have seen this in our face to face peer support groups consistently for the last ten years. The breaks at conferences like this are actually as valuable as the content.
Seeing new devices and learning about them.
During dXLisbon I had the opportunity to see two new products that were not Abbotts and I could ask the user questions about it. This was really important because one of the products is not available in Ireland and so I would only have this opportunity if I was outside of Ireland.
I saw the new Kaleido Patch insulin pump in real life, I also had the opportunity to meet other “loopers” and ask questions to them that I just didn’t feel comfortable asking online. I learned about a new and interesting product, TickleFlex, that I had never come across before.
Learning from complete strangers
The diabetes online community is global but, even so, I tend to stick to English speaking DOC’ers and traveling to an event like Abbott dX takes me outside of my bubble where I meet amazing people I would never have come across online. My fellow delegates share the challenges the diabetes communities have in their countries and often the collective group can offer ideas on solutions. We also exchange information on the successes and triumphs. As a self taught diabetes advocate this is information I can’t access as a google university student.
I learned that in Greece every person with type 1 is offered a freestyle libre, no questions asked. Mind blown!
I learned that in Germany children are cared for very well medically and can leave the hospital after diagnosis already on an insulin pump. Again my mind is blown! However, the psychological issues that children and their parents are not addressed at all. And that a school can refuse to educate a child with type 1 diabetes - this is a huge issue in Germany and, it turns out in Italy also. Several people in the room shared very useful ideas about how this could be addressed in those countries.
THE EVENT ITSELF
Abbott do their best to help us on this journey of learning how to best provide what our communities might need and to facilitate the exchange of ideas. Unfortunately, on this occasion, they failed at the former on day one but day two was exactly as prescribed.
As for the exchange of ideas, we are all so hungry for this knowledge we use every break and every meal to immerse ourselves in this as well as during some of the content.
My weekend began at breakfast, with the sight of familiar faces from previous events and a catch-up on what I missed from the previous evening. Then, we were bused to our location for the day, the Village Underground, which looked like a nice junkyard but it was really cool.
Evolution of the Freestyle Libre
Alexander Seibold, Abbott Medical Director, EMEA
Our first speaker was Alexander Seibold presented an update on Abbott’s progress in world domination with the Libre. Currently, Freestyle Libre has now more than 1.5 million users. The Freestyle libre Version 2, which has the option to switch on alarms, has begun its roll out with Germany and just recently Norway. Sorry no details on the roll out in other countries. There are 33 countries where there is partial or national reimbursement of the Libre.
Alexander said, “The real challenge in diabetes is preventing complications” and we know that we can increase our odds in doing this if we have less hypo events, less variability in our glucose numbers.” and went on to mention that:
“People who have more hypo events have greater morbidity rates.”
“It’s well known that every 1% reduction in HbA1c reduces the risk of complications by 30%”
Alexander shared some of the latest clinical studies findings from the IMPACT Type 1 Diabetes study and REPLACE Type 2 Diabetes study, which were announced at ADA. I had seen most of this information thanks to the DOC members tweeting it out but having someone taking through the information being presented and filling in the information missing from the slides is really helpful to understand the impact of these trial findings. The big news from the REPLACE study is that the Freestyle Libre has proven to reduce HbA1c in the Management of Insulin-Treated Type 2 Diabetes.
Alexander also shared the results of the Assoc of British Clinical Diabetologists ABCD FreeStyle Libre National Audit which shows improved diabetes control in people with Type 1 diabetes.
He went on to share findings from another non-Abbott sponsored study, the “Clinical Targets for Continuous Glucose Monitoring Data Interpretation: Recommendations From the International Consensus on Time in Range” which did create quite a buzz at ADA’s scientific Sessions in San Francisco. “The new recommended Time In Range is 3.9 mmols to 10mmols.” Obviously, this is a general guide and can be adapted for the individual. This particular study, which is endorsed by a multitude of well respected medical associations such as JDRF, EASD, ISPAD, ADA, etc and strengthens the arguments in favour of CGMs being the standard of glucose monitoring.
Artist Appleton: Testimonial & Art Showcase
The highlight of this day was our speaker, Taylor Appleton, a US based street artist who has lived with type 1 diabetes for over 40 years and is using his art to speak about the insulin crisis in the US.
Appleton was diagnosed with type 1 at age 6 and spend four days in a dka coma at diagnosis. However, a number of years before Appleton was born he had a sister who passed away from undiagnosed diabetes. I can’t imagine the trauma his parents were going through as they watched a second child linger in a come.
“Through his art, Appleton seeks to raise and spread awareness. By putting his message on the streets, he asks passersby to wonder what they see, what they are looking at….something over 30 million American diabetics look at everyday.”
You can see more of Appleton’s art here
We took a break from all the seriousness and embraced graffiti spray cans and canvas.
Driving Positive Change
with Adrian Long, UK and Kathy Dalinger, Germany
This was a blogger led event with two of our fellow delegates sharing their stories of creating positive change in the diabetes community. Adrian Long has been one of the leaders in the #GBDOC for almost a decade if not more and participating in the weekly #GBDOC tweet chat. And when that event was threatened with extinction he was among the few who said “No, we shall overcome and continue” and so it has. The online twitter community has evolved into many offline events such as many weekend meetups and of course the incredibly successful TADTalks led by Dr. Partha Kar and now we have TADonTour.
Find Adrian here and on twitter here
Kathy Dalinger from Germany is a parent of a child with type 1 diabetes. When Kathy’s daughter was diagnosed, she felt that when she was discharged from the hospital that she had all the support and knowledge she needed… medically. However, she did not feel equipped at all in terms of the psychological issues that both she and her child would face. She founded the blog Kinder-mit-typ-1diabetes, Children with type 1 diabetes, in 2014 to reach out to other parents and creating a parents support group because her motto is “Strong parents create strong children” and I wholeheartedly agree.
Sunday was by far the most worthwhile day with speakers who “got” us.
New Technologies in Diabetes
João Raposo
Dr João Raposo, an endocrinologist and clinical director in the APDP Portuguese Diabetes association and with ties to EASD and IDF. Anyone who takes on this topic is very, very brave when there is one particular, diabetes technology expert, Tim Street from the UK’s DIY community, in the room. However, the topic wasn’t based around what new technologies are in diabetes but on really on the challenges in creating new technologies and are they really good.
Side note: I know Tim is a dedicated support person but my jellybeans does he have the patience of a saint. Myself and the fellow loopers fired question after question at him at every opportunity and he answered them time and time and time again. And sometimes answering the same ruddy questions from multiple people.
He began his presentation by asking us what we want to have to manage our diabetes, what did we think would make our lives better in 10, 20, 50 or by 2100 years. Our answers ranged from smarter, faster insulins to commercial closed loop artificial pancreas systems. He then shared with us some health predictions from 1999 (only 20 years ago!!!). Some of which made us laugh out loud: the common cold will be a distant memory, insulin will be taken in pill form.
Then gave us a brief history of the Portuguese Diabetes Association which was founded in 1926 because even though insulin was available people were still dying because it was too expensive. Yes he did say 1926 not 2019.
He also challenged us to think about technology more inclusively and with the access and cost challenges we face when something new is introduced.
Science Fiction in Healthcare
Dr Bertalan Mesko, a medical futuristic
For me, the most interesting item on the agenda, and this is before the event. ok, I’ll be honest, I was really taken in by the title and had high hopes that we would have some popular sci-fi cultural references. I’m not a geek but am married to one and it does rub off. This presentation did not disappoint on any level for me.
Dr Bertalan Mesko, a medical futuristic, analyzes how science technologies can become a reality in medicine and healthcare and yes lots of Star Trek references and other sci-fi culture
“As a medical futurist, he works on bringing disruptive technologies to medicine & healthcare; assisting medical professionals and students in using these in an efficient and secure way; and educating e-patients about how to become equal partners with the caregivers.” Forbes Magazine
Today, we have sci-fi becoming reality everywhere, every day, in every industry, except the one that matters. Why do we not have science fiction becoming reality in healthcare?
Bertalan discussed various reasons why healthcare is not open to innovations such as lack of time, doctor shortages, mistrust, lack of resources, fear of the unknown, etc. But also because innovation is happening so fast that it’s overwhelming healthcare. Healthcare is trained to be slow and it also chooses to be slow.
He used the example of how it took 30 years for the stethoscope to become a tool in healthcare because doctors didn’t want to use gadgets - it was a wooden tube.
The possible solutions to address this lack of innovations were that healthcare professionals EMBRACE PATIENT DESIGN and that Patients MUST be involved in every level of healthcare decision making.
** If you are a health professional reading this, please go back and read that again.
And just in case you missed it…
A cultural transformation is needed in healthcare and patients can/will drive this. We should be out own point of care. was for us, the patients to become our own point of care. And I love THIS!!! Yes, I totally want to be my own point of care! Actually I am! So box ticked. And with empowered patients come empowered healthcare professionals, we can lighten your workload, and there will also be an equal partnership.
I could go on and on about the concepts proposed in Bertalan’s presentation, it was my absolute favourite one of the entire weekend, but why don’t you see for yourself. This is a similar presentation to ours but for healthcare professionals.
Disclosure Abbott have covered my transport, flights, accommodation and meals to allow me to attend. However, I haven’t been paid for my time and all my opinions are my own.
