ON-SITE REPORTING FROM DTM 2019, BETHESDA
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Language Matters Because People With Diabetes Are People First
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Language (and the use of language by panel members) was one of the buzzwords at the DTM last month, even when it wasn't the main topic - and that’s a great thing.
#LanguageMatters and words have weight - being sensitive about the language used when discussing patients, whether or not they are in present in the room, is KEY.
Words like (but not limited to) non-compliant, non-adherence, and labeling blood glucose as good Vs bad, are all self-defeating terms that have the ability to keep people with diabetes down, instead of empowering and allowing them to take ownership of their diabetes.
How people with diabetes are discussed in real-time by diabetes healthcare providers, industry and diabetes tech manufacturers (and the technology they create) not only matters, it’s crucial.
At the beginning of the first workshop on Thursday morning, CDE, Deb Greenwood kicked off the discussion by pointing out that “adherence, is something a provider wants a person to do; it’s not a patient-centric term,” and suggested changing the title of this session to “treatment choices.”
I was all for it. I say, retire words like adherence and non-compliance from the diabetes vernacular!
Diabetes is a disease that requires so much from those of us who live with it, our families, and our healthcare teams.
People with diabetes are frequently judged more harshly by society, and the language often used to describe them and/or their behavior isn’t always kind.
Diabetes has become a punchline and an Instagram hashtag used to describe sugary desserts - and unfortunately, that’s how it’s perceived by the majority of the public - instead of the multi-faceted and complicated disease it is.
People with diabetes are often referred to as being non-compliant, non-adherent, lacking control, continually ignoring advice, and often too lazy and stubborn to change their behaviors.
Is it any wonder we fear judgement and struggle emotionally and physiologically when it comes to managing our disease?
Key Communication Barriers In Diabetes Mentioned
Word Choice
Overall, remember that #LanguageMatters.
English As A Second Language
When English is the second language of the PWD, important information can get lost in translation and frustration.
What Does That Mean?
Diabetes has its own language, and many living with diabetes don’t speak the dialect or understand the terms healthcare providers use when discussing their diabetes or D technology - and are often too embarrassed to admit it.
Example: many people are given a blood glucose meter at their healthcare providers office, but are never shown how to use it. They get their test strip Rx filled, go home and have no idea what to do next. So they do nothing.
Depression
Depression is a huge factor in PWDs sticking with diabetes treatments. Living with a chronic illness like diabetes can make you depressed, and living with depression makes self-care difficult. Depression and diabetes have the potential to become a vicious cycle.
Healthcare professionals recognizing depression symptoms and encouraging patients to seek treatment for mental health leads to better managed diabetes.
People with diabetes aren't choosing 'non-adherence' because they want to. They are overwhelmed by what diabetes as a whole represents and they are terrified.
Better Communication Tools Make Everyone Happy
If you want people to become embrace diabetes technology and apps, don’t define them by their data.
It was pointed out in several sessions that it is the person with diabetes who makes the decision to share their data, so don’t judge them when they do.
Every number has a story - the person and the data together tell that story - so listen.
It’s not rocket science. Diabetes tech (including apps) created with person first, empowering language will be embraced. Those without, won’t.
Healthcare professionals should be pointing out a PWD’s strengths, before focusing on the PWD’s “diabetes management challenges.”
Diabetes or not, everybody needs encouragement.
My Endo always starts off by pointing out the positives in my lab work.
Because of that, I’m calmer and better able to focus, process and incorporate his suggestions re: improvements to my diabetes management.
“Nudging toward self-care comes in many forms,” stated, Dr. Mark Clements from Children’s Mercy Hospital.
And a nudge in the right direction is recommending Online and Offline Peer Support - this would be when a slide discussing the DOC (Diabetes Online Community) was shown and mentioned directly!
Diabetes blogs, online communities, and Twitter chats all help people with diabetes overcome the isolation they often feel. Encouragement from D peers leads to PWDs making positive choices and feeling empowered! RIGHT ON.
HCP, industry, and tech realizing that data overload is thing.
Lastly, people with diabetes are human beings - treating them as such in discussions about them and remember that face-to-face makes all the difference.
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The Future of the Diabetes Ecosystem: Viewpoint from the Diabetes Technology Meeting 2018
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- Industry gets a faster turnaround time
- FDA wields more power
- PWDs get faster access to d tech products at a better price with greater customization and real-time accuracy.
The Diabetes Technology Meeting (DTM) 2018 focused on the expansion at an exponential rate and in all dimensions thanks to tech innovations in diabetes management.
Here's a map to help you navigate the current topography.
The FDA
In 2018, innovative diabetes tech's lightening pace of advances is being met by better FDA frameworks, including their Breakthrough Devices Program and Pre Cert Process - because according to FDA Rep & Speaker Jeff Shuren, "Government has to be innovative too."Some benefits of the FDA Pre-Cert Process are: More product innovation for people with diabetes, allowing for easier and accelerated FDA clearance for "machine learning products," (a.k.a. Diabetes Tech) whose continual evolution occurs over the time and diabetes tech space continuum.
This approach forces industry to pursue a culture of quality, excellence, and transparency.
Fewer reviews for modifications, equal lower costs for PWD. Industry's requirements will include collecting real world data re: software performance (clinically and operationally) and sharing data with the FDA and the public. This will lead to a broader scope of software subject to regulation; more detailed pre-market reviews, increased access to company records/inspections, and greater power to order corrective actions once the product hits the market.It's a win in triplicate.
Diabetes Machine Learning Products
The future will see Glucose Meters, Insulin Pumps, CGMS, and Smart Insulin Pens working in tandem via apps and with software that allows for more personalization, subsequently increasing user confidence and resulting in happier PWDs and labs.Speaking of smart insulin pens...
Adding Insulin Smart Pens Into The Mix
CDE Jane Seley pointed out that insulin pumps aren't for everyone and believes that smart insulin pens have the ability to expand the world of diabetes management for PWDs on MDI (multiple daily injections) and provide them with connected solutions.
Smart pens provide improved data, medication reminders, and if used properly, a reduction in daily insulin.
Sidebar: Smart pens need the ability to communicate and share dosing info across ALL diabetes smart machines, INCLUDING insulin pumps.
Currently, those of us wearing insulin pumps store larger correction injection bolus info in our heads and must continually subtract said injected bolus from future insulin pump correction boluses. Connecting smart pens and insulin pumps would make this aspect much easier.Diabetes Apps
This part of the D Ecosystem is encompassing larger chunks of real estate by the day!
What Makes A Diabetes App Successful?
Successful apps don't bombard users with interruptions, provide customization of features, predictive alerts and trend spotting, and allow the user to share as much (or as little,) real-time info between the PWD, D smart machines, and their D healthcare team.Keys To A Successful Diabetes App Engagement: App designers need to work directly with regulators; academia, industry, and healthcare providers - AND with those wearing/using the Diabetes hardware itself, generating the data that is shared with their HCP, and making daily tweaks to their diabetes management.
I'm talking about People with Diabetes.Language: If you want a person with diabetes to use your D app, Person First language and up-to-date diabetes terminology make all the difference.
If your app speaks in a dialect that people with diabetes or d healthcare professionals don't use and/or find degrading or insulting, then it won't succeed. #LanguageMattersLittle Things Are BIG: Battery usage, the use of input/output ports and the headphone jack, power specifications, availability across multiple platforms and operating systems, easy readability, and a modern interface.
Inclusion and tracking of Diabetes and Non D Medications
Many living with type 2 diabetes don't take insulin - they take oral D meds and or non-insulin injectables.
People with diabetes in all dimensions may require oral medications, injectables, or inhaled medications.
Also, not all medications PWDs take are diabetes related - but directly impact our health and overall diabetes management.
Diabetes apps must create space to provide data for ALL meds.End Result
When ALL of our diabetes parts are interconnected and communicating with each other, it instills confidence, enables problem solving, and generates data that PWDs will share with healthcare pros in a stigma-free zone and in real-time.What the Diabetes Eco-System Needs More Of
The Human Factor
During one of the afternoon sessions, Martin Lange from Ascensia Diabetes Care brought up something incredibly important in my opinion, often overlooked by those developing diabetes tech and tracking D data.Diabetes is more than just blood glucose - and blood glucose is so much more than just carbs.
Personal factors like stress; sleep (and lack thereof), exercise, blood pressure, triglycerides, hormones, and state of mind are just a few of the dozens of factors that are KEY contributors to blood glucose and diabetes management.
As a person living with T1D, I appreciated that statement so much - BECAUSE IT'S TRUE.
I've experienced all of the above when it comes to blood glucose challenges - especially related to stress impacting my blood glucose and my A1c results, first hand.No Matter how "smart" D hardware and software becomes, diabetes by its very nature means 2+2+2 doesn't always = 6. Which is why living with diabetes can be so frustrating! It's a different disease every day.
People With Diabetes Are Part Of The Diabetes Ecosystem
People with diabetes are more than the twin of their diabetes data. We represent what the data cannot articulate - the living, breathing, real life component of diabetes. Our voices need to be included on panels and discussions when it comes to diabetes tech.Sidebar: I'm not the only one saying this - many who attended the DTM pointed out the lack of PWD participation, including an audience member name John - a former NASA employee (YES, that NASA), who brought up the that lack of PWD representation in the developing Diabetes Ecosystem - across the board and at the DTM - creates major voids re: data, efficiency and user experience of diabetes smart machines.
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If you have any questions about the latest available blood glucose solutions, contact Ascensia Diabetes Care in your country. Visit contact.ascensia.com for a full listing of countries.
Questions or comments about this website, please CLICK HERE.
Please note that not all products are available in every country.
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Last updated: July 2022. Code: G.DC.01.2016.37920
Please note that not all products are available in every country.
The company that brings you CONTOUR® products now has a new name. Introducing Ascensia Diabetes Care.
Ascensia, the Ascensia Diabetes Care logo and CONTOUR are trademarks of Ascensia Diabetes Care Holdings AG.
© Copyright 2017 Ascensia Diabetes Care Holdings AG. All rights reserved.
Last updated: July 2016. Code: G.DC.01.2016.37920