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The importance of including lived experience voices in research, from #dedoc° voice Cameron Keighron

In March 2024, I attended the ATTD (Advance Technologies and Treatments in Diabetes), which was held in Florence, Italy. I attended via a Dedoc scholarship, which is a programme that allows patient advocates to attend diabetes conferences, with the intention of allowing patient advocates to use the knowledge and #PayItForward to their community in their own way.

Alyssa and Cameron in front of ATTD sign, smiling at camera
Alyssa and Cameron at ATTD

Below is a video from one of my friends, Cameron Keighron, who was also a dedoc voice at ATTD, discussing the importance of including lived experience voices in research. I knew Cameron previously as we are both also volunteers for IDF Europe (International Diabetes Federation Europe), and I was delighted when we were both accepted for a dedoc scholarship at ATTD. Cameron is a research PhD Candidate from Galway, Ireland, and they have also been involved in several different diabetes research projects. Pair that together with their lived experience of Type 1 Diabetes, Cameron has a lot of expertise in the benefits of including lived experience voices in research.

In the video, Cameron discusses how research projects and researchers will ultimately benefit from including lived experience voices in research as the end product will be superior. If the end users, the people who will ultimately benefit from the research, weren't included in the process, it will show, as the end result may not be as useful as it needs to be. People with lived experience should be included in conversation, they have expertise that should be valued, and they should be shaping the research.

Individuals like Cameron, who have vast experience from a range of places, would be an excellent addition to research, however including anyone with lived experience would be beneficial. All voices should be valued, people from all walks of life, and not automatically the already engaged individuals.

I have mentioned it previously, but Renza Scibilia and Jazz Sethi published "Guidelines for Effective Partnerships" to aid impactful collaborations with the diabetes community. This is also very relevant to researchers wanting to include the lived experience voice.

Additionally, Emma Doble, founder and director of CEE Health and Patient Editor at the BMJ, discussed including lived experience in research at a recent #dedoc Symposium. She explained that the politics in research is changing, and more and more journals are looking for research that have included lived experience voices throughout, as it adds more validity to the research. If you want to hear more from Emma, her contributions start at 58 minutes in the video below:

Including people with diabetes and making them feel valued can only benefit your work, so why wouldn't you include them?!

Until Next Time,

Alyssa x

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