There is often great work happening in the diabetes world, led or involving people with lived experience. Often this is done on a volunteer basis. However, when working with organizations, we hope (and expect) that community members are compensated for their time and expertise. Of course, there are many organizations doing great work, especially those that work closely with people with diabetes through intentional and meaningful community activities.
Here are some activities that community members can get involved and participate in:
AID Access – The Time is Now!
It's National Diabetes Week in Australia, and if you've been following the news, you'll have noticed that access to technology is on the agenda. I'm pleased to see that the work I've been involved in on access to AID (specifically improving access to insulin pumps in Australia) has gained momentum and the issue is now firmly on the national policy agenda. This was one of our group's goals when we first started working together. Now we A consensus statement endorsed by community members and Australia's leading diabetes organisationsimportant recommendations in the recently released Parliamentary Diabetes Inquiry, and increased awareness of this issue. But we're not done yet. There's more to do. Last week I wrote that we need the community to continue to get involved and speak out on this issue. This update Here's the details on what to do next.
To show your support immediately, sign the petition here..
Language Issues Pregnancy
Earlier this week, New Online Survey The experiences of people with diabetes before, during and after pregnancy, particularly the words and communication used around them and with each other. Words always matter and it doesn't take much effort to learn from people with diabetes how important words are at a particularly vulnerable time when pregnancy comes on the agenda. So this work has been very much driven by the community and many people have come together to establish how we can better support people with diabetes at this time.
Congratulations to Niki Breslin-Brooker and the team of mostly local residents and health care workers who spearheaded this effort. This was all done by volunteers outside of work hours, between caring for their families, managing their jobs, and managing their diabetes. It's been an honor to work with you all, and I'm excited to share more details about what we've been doing.
Check out some of the artwork It was developed to coincide with the artwork. I know it's not hard to make changes that will make a big difference. The phrases in the artwork will be familiar to many people with diabetes. I certainly heard most of those phrases 20 years ago when I was planning to become pregnant. After all, people still hear them today. We can and should change that.
By completing this survey, you will be helping to take part in this important work. This survey asks about your experiences. It is aimed at people with diabetes, their partners, family and supporters. It will run until the end of September and will inform the next phase of this work: a position statement on language and communication to support people with diabetes.
How can I participate in the study?
One of the most common questions people with diabetes ask is how they can find out about and get involved in research studies. Ideas for Australian diabetes patients: JDRF Australia is the driving force behind type 1 diabetes research in the country, and a quick look at their website will give you an overview. All the exams are neatly organized on one page This is so you can easily see what's going on and see if there's anything you can sign up for.
Another great central place to find out about current research is Diabetes Technology Research Group Website.
ATIC is the Australian and New Zealand Type 1 Diabetes Immunotherapy Collaboration, a clinical trials network of adult and paediatric endocrinologists, immunologists, clinical trialists and members of the type 1 diabetes community working together to accelerate the development and delivery of immunotherapy treatments for people with type 1 diabetes. For more information on the Center's current research, please click here.
Hypopast
What is HypoPAST? HypoBlood glucose level Pprevention, aRecognition vinegarSymptoms and THypoPAST is an innovative online program designed to help adults with type 1 diabetes overcome their fear of hypoglycemia. The program focuses on hypoglycemia prevention, symptom recognition and treatment and provides comprehensive resources, including information, activities and videos. Study participants access HypoPAST on their computer, tablet or smartphone.
“This research is extremely important as it addresses a critical need in the diabetes community and leverages a technology that provides a practical tool to improve diabetes management. By reducing anxiety associated with hypoglycemia and improving symptom recognition and treatment strategies, HypoPAST has the potential to improve quality of life for people with type 1 diabetes.”
This study is being conducted by the ACBRD and is currently recruiting participants. We are nearing capacity, but still have spaces available. Click here for details How to participate:
Type 1 Screen
Screening for type 1 diabetes has been a major focus at this year's scientific meetings. At the recent American Diabetes Association scientific sessions, information on screening and staging of type 1 diabetes was featured in a number of sessions and symposia in Australia. For more information on what is happening in this area in Australia, please visit: Check Type 1 Screen.
And what to read
This article was published in The Lancet earlier this year, but we are sharing it here for the first time.This article discusses the importance of genuine consumer and community engagement in diabetes care, highlighting the benefits and challenges of ensuring diverse and representative participation to effectively address community needs.
I spend a lot of time thinking about true community engagement in diabetes care and how people with diabetes can contribute “from the inside.” By “inside,” I mean diabetes organizations, industry, medical practice, and research. I may be biased, but I think we contribute something. I’m grateful that others think so too. But that’s not always the case. The impact we have is sometimes ignored or downplayed, as are the challenges we face when we fill these roles. I don’t speak for others, but to give my own personal example, I start as a diabetic and I end as a diabetic. I work for diabetes organizations, I have my own health consultancy, and I spend a lot of time volunteering in the diabetes world, but at the end of the day, and what I never forget, is that I’m a diabetic. And I think others would see me that way, or at least remember me that way. It was a bit shocking this year to see some people seem to forget that.
Final thoughts…
During a recent visit to Breakthrough Type 1 Diabetes headquarters in New York, I realized just how many people within the organization are living with the disease. It's a nice shock to realize how many people have lived through this disease. very – Community. Being surrounded by people with diabetes at all levels of the organization, including the CEO, is really amazing. But you don’t have to be diabetic to work in diabetes. Some of the most influential people I’ve worked with didn’t have diabetes. But it was important to them to be around people with diabetes as much as possible. Having people with diabetes on staff makes that so much easier. I first visited this organization’s offices a few years ago, long before I worked with them, to give a talk on language and diabetes. One of the things that struck me back then was how integral the lived experience was at that organization. From the drip stations (obviously provided by PWD, who knew they’d need supplies!) to the conversations with the team, community was in the DNA of the place. As a staff member, I’ve visited HQ a few times and it’s driven home that even more. I was walking through the office a few weeks ago and one of my coworkers had this on his desk and I couldn’t stop laughing when I saw it. IYKYK – and we totally knew!
Disclosures (We have a lot!)
I AID Consensus Statement, And that National AID Access Summit That led to this statement.
I am part of a team. Language links to diabetes and pregnancy Initiative.
I was a co-author on that paper. Living between two worlds: Lessons for community participation.
I am an investigator Hypopast study.
My contributions to these efforts were voluntary.
I am the representative Attic I participate in community groups and receive gift certificates as a reward for attending meetings.
I Breakthrough T1D (Formerly JDRF).
