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Advice for Companies who Want to Work with People with Lived Experience

Last week, I was luckily enough to attend ATTD (Advance Technologies and Treatments in Diabetes) 2024, which was held in Florence, Italy, where Dedoc offered me a scholarship to attend as a Dedoc voice. These scholarships allow patient advocates to attend Diabetes scientific conferences, with the intention of allowing patient advocates to use the knowledge and #PayItForward to their community in their own way.

Alyssa posing in front of the ATTD sign in Florence

At every conference, Dedoc hosts a symposium where they invite individuals in the Dedoc community to present, and it is live-streamed and free to access. This year, there was a spectacular line-up, with Nathalie Bauer & Renza Scibilia hosting, Asra Ahmed discussing the D-Coded project, Tinotenda Dzikiti discussing bridging the tech gap in underserved regions, Nur Akca discussing the accessibility of diabetes technology for people with disabilities and Leon Tribe discussing the Insulin Consensus. After these inspiring and thought-provoking presentations, the audience got onto the topic of including the lived experience voice in conversations that affect them. Watch the Dedoc Symposium here.

The conversations were interesting, and it sparked some thoughts within the room. How does meaningful engagement with people with diabetes happen? Should people with diabetes be paid for their expertise? The reality is that people with diabetes provide a lived experience perspective that cannot be replicated, therefore showing that the lived experience voice should be valued more than it currently is.

After the Dedoc Symposium, I decided to interview some patient advocates who were present at ATTD and ask them if they had any advice for companies wanting to work with people with lived experience. Find the video below:

I think the great thing about the diabetes community is that often multiple people have similar ideas but different execution. As I was editing the video, Renza Scibilia and Jazz Sethi published their “Guidelines for Effective Partnerships” to aid impactful collaborations with the diabetes community. This is excellent, and I feel like it highlights everything the patient advocates mentioned in the video above!

Work can only benefit from including lived experience voices in the work, but it’s important that the time and expertise of people in the diabetes community aren’t taken advantage of. This can be done in a multitude of ways, as stated in the guidelines for effective partnerships:

  1. Reimbursement

  2. Recognition

  3. Representation

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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