Guidelines for effective partnerships | Diabetogenic

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The #dedoc° symposium kicked off ATTD 2024 in the most powerful way. Four community advocates from across the globe presented on a variety of topics including access to insulin during humanitarian crises, access to diabetes care and technologies in low income settings, accessibility of technology for people with diabetes also living with disabilities, and access to research findings. You can hear the brilliant talks from #dedoc voices Leon Tribe, Tinotenda Dzitiki, NurAkca and Asra Ahmed here.

During the panel discussion, there was an important discussion about how and why it is critical for people with diabetes to be included in all conversations about diabetes. Meaningful consultation is the golden ticket here, and there were some valuable comments and suggestions about how that happens. Someone asked the question about reimbursement for lived experience expertise, an often ignored issue when it comes to people with diabetes being involved in research, programs, committees and anything else that takes our time. Our unique perspective cannot be provided by anyone else, and yet there is rarely budget to cover the costs of our participation. Sadly, it’s not routine to offer payment for our time, instead we are often made to feel that we should be grateful for a seat at the table. It’s worth reminding those who don’t value us in a financial way that WE ARE THE TABLE and without us, there wouldn’t be a place setting for anyone else.

It was clear from the conversation that diabetes advocates – even those sitting on stage at International scientific conferences – find it difficult to ask for their valuable expertise and time to be reimbursed.

I jumped off stage and made a bee line for Jazz Sethi. We do this thing at conferences that I’ve started referring to as the ‘Jazz and Renz conference special’. (You can see previous efforts here and here.) Within five minutes we’d hatched a plan for our next project, and today, we’re so excited to share it. It was clear that we need some ‘Rules of Engagement’ that provided a clear and easy way for people with diabetes and those seeking to work with us to understand not only why engagement and consultation is essential, but why it’s also essential to pay for our time.

It’s not just about reimbursement though. It’s also about recognition for that work in a multitude of ways including being included as a co-author on publications, included on programs giving presentations and having our expertise acknowledged as just as important as all other diabetes stakeholders.

And so, here are some simple guidelines that can be used by people with diabetes when working with organisations, researchers, healthcare professionals, industry and anyone else who wants out expert knowledge. Use them in your discussions with anyone who invites you to be involved in diabetes work. Print them out and take them with you when you’re meeting with anyone running a project or convening an advisory group. Share them in your networks so as many people as possible can use the information to guide discussions about ensuring our value is truly acknowledged. We hope that this will make those discussions just a little easier.

And for those who wish to work with us, have a read. If you still think that our time isn’t worth your budget, or our expertise worth real recognition, then it can only be considered that you are doing the very least to include people with diabetes. That’s tokenism. We’re not here for that anymore.

GUIDELINES
FOR
EFFECTIVE PARTNERSHIPS
AND
IMPACTFUL
COLLABORATIONS
with the diabetes community

#NothingAboutUsWithoutUs
Introduction
Meaningful Engagement
People living with diabetes offer a unique perspective across all domains of diabetes healthcare, research, campaign development, and technology. #NothingAboutUsWithoutUs embodies the principle that people with diabetes must be central to every discourse concerning the condition.
Engagement takes many forms, including:
Community advisory boards • providing feedback • appearing in campaign materials • social media posts • speaking engagements including panels • attending multi-stakeholder meetings • consulting for research.
Expertise, stemming from diabetes lived experience holds equal, if not greater, importance than contributions from all other diabetes stakeholders.
When acknowledging the importance of community involvement, it's essential to recognise that people with diabetes will be undertaking these activities in addition to professional and personal responsibilities, and the ongoing management of diabetes.
The Guidelines
Outlined are fundamental guidelines for engagement which serve as a cornerstone for fostering collaborative partnerships that honour the invaluable insights and contributions of people with lived experience of diabetes. This is for, and anyone wanting to work with, people with diabetes including diabetes organisations, researchers, clinicians, conference organisers, industry and healthcare professionals.
N.1
REIMBURSEMENT
Recognition of that expertise, knowledge, and lived experiences requires reimbursement. Compensation for time, expertise, and any associated costs should be budgeted.
N.2 N.3
RECOGNITION REPRESENTATION
If the work involves research likely to be published, co-authorship should be offered. This will strengthen the publication. While advocates may chose to opt out of involvement in publication development, the opportunity for inclusion should be extended.
Recognising that diverse perspectives collectively contribute to a richer understanding, it's crucial to include multiple people with diabetes to enrich the strength and depth of your work. Representation must go beyond mere tokenism.
Conclusion
Engaging and involving people with diabetes leads to the creation of materials and events that are better received by the community. Such initiatives are shared widely, commended, and acknowledged as examples of meaningful and inclusive collaboration. Additionally, there is a higher likelihood that the language used aligns with the principles of the #LanguageMatters movement, recognised for its efforts to avoid diabetes stigma.
These guidelines get it right.
Something that can only happen with community involvement!

Disclosure

I was an invited speaker at ATTD 2024 where I presented on the T1D Index in my capacity as Director Community Engagement and Communications in the Global Access Team at JDRF International. I also chaired a session on access to research. ATTD covered my registration costs. My travel and accommodation were covered by #dedoc° where I am Global Head of Advocacy. I chaired the #dedoc° symposium at the conference.



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