Decoding diabetes research – an innovative approach that makes scientific knowledge accessible to everyone

Summary

D-Coded is an online resource that presents easy-to-understand summaries of diabetes research studies. It aims to make the latest knowledge and developments accessible to people who don't have a medical or scientific background. In this blog, Jazz Sethi, Founder and Director of the Diabesties Foundation and part of the global team that developed D-Coded, discusses the need for the resource and outlines how it will help people living with diabetes to better understand and manage their condition.

Content

Navigating life with diabetes involves continual learning and adaptation. As someone with type 1 diabetes, my own experience has taught me that managing diabetes effectively hinges on understanding it. My insatiable curiosity about the latest research, trials and scientific advancements has always fuelled my hope, and the hope of many others living with the condition.

However, immersing oneself in the vast sea of medical literature can be overwhelming. More often than not, I have found the dense jargon and complex statistics more alienating than enlightening. This struggle isn’t mine alone; it is echoed in the stories of countless others in the diabetes community. It was this shared challenge that led to the birth of D-Coded—our collective answer to a complex problem.

D-Coded is an online resource that summarises diabetes research studies so that people with no scientific background can understand them. It is a community initiative forged from a partnership between researchers, academics and those with first-hand experience of diabetes—our 'decoders.' Members of the team distil complex research papers into easy-to-understand content. They prioritise getting across the essence of the information, employing clear language and engaging analogies to unravel complex topics. This 'decoded’ content is then meticulously reviewed by expert researchers and authors to ensure that scientific accuracy is maintained. They give the final stamp of approval before we share the information on the website. We have also ensured that the design and aesthetic of these summaries is bright and colourful – a pleasant surprise when looking at medical research!

What distinguishes D-Coded is our emphasis on relevance. We delve into the significance of research and its practical implications for individuals with diabetes. Our goal is for these simplified insights to become a foundation for self-advocacy and to inform policy decisions.

Our advisory panel is a testament to our commitment. Professor Partha Kar, National Specialty Adviser for Diabetes at NHS England, is a member of this panel. He emphasises the necessity for academic and research communities to pivot towards real-life impact. Partha says: "The ethos of academia and research needs to change if all concerned genuinely want their work to translate into real life changes. Without that? All work is only but a line on one's CV or an extra feather in the personal accolades column- yet without actually changing lives. Part of that process is putting the power, knowledge and data of that into the hands of those who matter most- and in this context? It is those with Type 1 Diabetes. D-coded is a unique concept exploring this- aiming to demystify science and help those living with Type 1 Diabetes take this into real life scenarios and help drive the necessary changes."

Renza Scibilia, another panel member with lived experience of diabetes, highlights the communication barriers that exist in diabetes research. “Communicating diabetes research is often hampered by its complexity and specialised language. There's a sea of acronyms, jargon and abstract concepts, not to mention the lengthy, intricate details and a lot of this research is tucked away behind paywalls, making it inaccessible for many. D-Coded helps shatter accessibility barriers, breaking down research so it accessible, authentic and informative.” 

Since its launch, D-Coded has evolved into more than a resource; it's a source of empowerment. The stories I've heard from our community are heart-warming—parents feeling more equipped to support their children with diabetes, adults gaining confidence in their self-care. These stories are the true measure of D-Coded’s impact.

Our aspiration is global: to render diabetes research universally accessible, nurturing a community bound by knowledge and mutual support. Our dream is to forge a world where diabetes management is underpinned by understanding, irrespective of location. This mission transcends mere information sharing, it's about leveraging knowledge for empowerment. I encourage you to explore D-Coded and join a movement where expertise and experience converge, fostering a brighter future for those with diabetes.

Related reading

• Top picks: 12 key resources about diabetes
• Partha Kar: Changing the narrative around self-management
• Blog - Peer support makes a big difference to living with type 1 diabetes

About the Author

Jazz Sethi is the founder and director of The Diabesties Foundation, a global movement to make those with Type 1 Diabetes feel heard, understood, supported and celebrated. The Diabesties Foundation has a dedicated YouTube channel and runs monthly meet ups, awareness tours, education programs and access and advocacy drives. Jazz was diagnosed with Type 1 Diabetes when she was 13 and currently uses an insulin pump, continuous glucose monitor (CGM) and DIY closed loop. 

The Diabesties Foundation works closely with Diabetes India, the Research Society for the Study of Diabetes in India (RSSDI) and NHS England to develop projects and publications. Jazz is also a certified diabetes educator and did her training with the International Diabetes Federation (IDF) program. She was the IDF’s Young Leader of Diabetes for South East Asia for 2019-2022, representing India. She is also a professional dancer, choreographer, theatre artist and a published author.