Wednesday started very early for me in a symposium with the auspicious title "Behavioral diabetes and technology: where is it going?". There were three presentations on this topic, of which I listened to two.
The first lecture of Prof. Norbert Hermanns (Diabetes Center Mergentheim) focused on the psychological effects of CGM technology and artificial pancreas devices.
In summary, he argued that both pump therapy and CGM-based therapy delivered significantly less positive results than had been promised when they were launched. And so he said, somewhat smugly in my eyes, that there were similarly modest results from the DIY Closed Loop Community too, especially in light of their slogan "We are not waiting to reduce the burden of diabetes", because these systems would not relieve the burden of diabetes that is on the shoulders of people with diabetes. On the contrary, the construction and operation of such systems would increase the individual burden due to the amount of time required and the technical complexity.
I cannot agree with that as a DIY looper. In my case, this technology allows me a freedom in my diabetes therapy like no other treatment method before. The time and mental effort for diabetes management has significantly reduced in my case and gives me, in addition to good blood glucose values, much more "peace of mind". But well, I'm just an individual so N = 1, as the beautiful scientific description goes. But then I'm not the only one who is doing this, as was shown in the results of a study that were announced to the public a day after Prof Hermann's lecture: Excellent Glycemic Control Maintained by open-source hybrid closed-loop AndroidAPS During and After Sustained Physical Activity.
Following the presentation by Prof. Hermanns, Prof. Katharine Barnard spoke about the psychological effects of diabetes apps and diabetes blogs. At least that was the title of her presentation. In the prelude, she did not advance any answers but instead provided a lot of possible questions. In essence, she listed questions and clues to identify or recognize good or bad blogs. What is the use of blogs or could they offer added value? What makes a good blog? She did not answer this last question herself, but provided answers to this question from the Diabetes Online Community. Here are some examples from her presentation:
- "Honest and personally based blogs"
- "I do not like blogs where it's all about self-promotion and I can not tell if it is advertising or based on honest thoughts"
- "I find writing a diabetes blog as an emotional relief that feels good"
She included in this session blog recommendations from healthline.com. However, these recommendations were mainly English-language diabetes blogs. European or even German blogs were rare. She then presented the possible positive, as well as the possible negative, psychological aspects of blogs and apps.
One of the positive psychological aspects is the importance of blogs to improve peer support by sharing experiences and understanding each other. Being able to network with others as a person with diabetes and thus be able to reduce the feeling of being alone called her a clearly positive aspect. Similarly, writing a diabetes blog as a form of therapeutic writing and the related reduction of anxiety and depressive symptoms may be considered psychologically positive.
As negative psychological aspects, Prof. Katharine Barnard mentioned the potential possibility of negative and hurtful comments and the fact that some blogs would promote more harmful behaviors rather than providing useful support. Opinions and advice expressed in blogs do not necessarily correspond to the facts, which Prof. Katharine Barnard also classified as a negative aspect. Likewise, blogs are self-regulatory and therefore it is possible that the content of some blogs for certain groups or age groups are unsuitable. Even blogs that would be written for reasons of self-expression or ego motivation, Prof. Katharine Barnard considered rather negative from a psychological perspective.
Even though I missed the big conclusion or the takeaway at the end of her speech, it was fun to listen to her. Her lecture was concise, entertaining and above all understandable.
Unfortunately, I can not say that about many scientific lectures. Everyone who once had the pleasure of listening to a researcher who in the worst possible English, but at a crazy pace, tries to present his highly complex and subject-specific research results, will know what I'm talking about.
I am often surprised or annoyed by the way people talk about diabetes in scientific lectures. To put it bluntly, I often get the impression that the speakers do not make much distinction between people and lab rats. Of course, one should not forget that these are often studies of thousands of people with diabetes and the individual is not the focus. I would do well to keep this in mind so as not to run screaming from the auditorium. Although I sometimes concede a few linguistic misunderstandings to scientists because of the complexity of their subjects, my understanding of this remains very limited when it comes to marketing messages from industry. Although the following messages can certainly be scientifically substantiated, they have more than irritated me. On huge banners and posters of some of the exhibiting companies was written in large letters phrases that read:
"For patients with type 2 diabetes, CV DEATH MAY BE CLOSER THAN YOU THINK "or" CV DEATH COULD STRIKE AT ANY TIME". I'm really wondering what's going on in the minds of the marketing virtuosos releasing such a patient approach (that's what they call it in their jargon). Even though the EASD is a convention for healthcare professionals and, of course, it is very unlikely that people with diabetes would be there, I find this description repugnant. This topic was also hotly debated within the Diabetes Online Community and was also met there with little understanding. In this context, I refer to the excellent blog post by Renza Scibilia. At such congresses as the EASD, eminent scientists hold clever lectures on diabetes-related depression and clearly pinpoint the causes: the anxiety of people with diabetes that, despite the greatest effort, they will suffer consequential damage. On the other hand, then, the industry is playing out this fearful narrative over and over again. Somehow this reminded me of the pictures of amputated feet that I was shown at the beginning of a diabetes training session. So far, I thought that such methods were a thing of the past. If I had to award the sugartweaks Award for the NO-GO of the EASD, I know who the winners would be.