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Your voice matters. Often the biggest changes in anything are the result of something initially small. People with diabetes are patients with power. You may not know it, but many of the advancements in today’s care and treatment of type 1 diabetes are the result of patients voicing their needs and experience in managing this disease.
- A few people with type 1 diabetes starting a conversation about creating their own “closed-loop” system eventually led to the creation of technology programming like OpenAPS and Loop.
- Expressing concerns and complaints over the language used in diabetes healthcare that often leave a patient feeling misunderstood and shamed has led to more changes in practitioner content and is the subject of current ongoing studies.
- Aggressive patient lobbying contending with pharmaceutical lobbyists has led to the creation of laws that better protect people with type 1 diabetes who don’t have affordable access to insulin.
- Diabetes device technology makes improvements and advances in their products based on the results of patient surveys — working to make diabetes technology better serve you.
- Helping to improve the understanding of COVID-19’s impact on people with type 1 diabetes and how to care for us if we do contract this virus.
Your voice matters. Your experience of living with diabetes matters. Your role as a patient with diabetes matters.
Participating in patient-focused research means you can help to improve and change the care you are offered at your next healthcare appointment.
- We have the power to make future changes like doing away with terms like “non-compliant.”
- We have the power to make continuous glucose monitors a true standard of care rather than a luxury item.
- We have the power to change the way healthcare professionals react in conversations with patients when reviewing a high HbA1c or high blood sugar levels.
There’s so much that we face on an hourly and daily basis that cannot be taught in medical school. There are so many situations or obstacles we face when using high-tech diabetes gear in real life that engineers can’t always anticipate.
It’s a complex disease that comes with an endless list of complex variables and challenges which means the more we can express and pinpoint those challenges, the more power we have to improve the tools available to overcome them.
Your voice matters.
Join the T1D Exchange Registry to Share Your Voice!
One of the simplest ways you can contribute to the ongoing improvements in diabetes care, policies, products, and experience of life with this disease is by enrolling in the T1D Exchange Registry.
Once enrolled, Registry participants have the opportunity to sign up for other studies on various topics related to type 1 diabetes. Each research opportunity provides a unique avenue to help us capture the full picture of what it is like to live with type 1 diabetes. You can generate real-world evidence to help impact policy, drug development, and ultimately, improve the day-to-day lives of people living with type 1 diabetes.
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