DECODE project
@DECODEproject2
NIHR funded Data-driven machinE-learning aided stratification and management of multiple long-term COnditions in adults with intellectual disabilitiEs @AIM_RSF
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We’re now on LinkedIn!🎉 Follow us for updates on our work to make health research more inclusive for people with learning disabilities - including news, resources, and events from the team at @lborouniversity 👉linkedin.com/company/decode… #DECODEProject #LearningDisabilities
Closing the day with words from Dr Satheesh Gangadharan 💬 “Most people see involving people with learning disabilities in research as a problem – but we have turned that around.” A powerful way to end today’s event. #InclusiveResearch #LearningDisability #PPI @lborouniversity
Loughborough’s DECODE project works with people with learning disabilities and their carers to understand what does & doesn’t work in healthcare – and involve them in designing solutions. @BBCEMT visited campus to hear from those involved 👇 tinyurl.com/y4454jp3 (see 11:07)
That’s a wrap on our conference: “Meaningfully involving people with learning disabilities in research”💜 Huge thanks to our speakers, PPI members & everyone who joined us today. Your insights and lived experiences are what make DECODE possible.🙏 #InclusiveResearch
Our final session is an open panel with today’s speakers🎤 The room is full of great questions & reflections - an inspiring way to wrap up the day and hear insights from the audience and speakers. #InclusiveResearch #LearningDisability #PPI @lborouniversity
Neil from @UniofNottingham on the ethics of inclusive research🧩 A great talk highlighting why it’s vital to involve people with learning disabilities at every stage of research - ensuring their voices and input are truly central. #InclusiveResearch #Ethics #LearningDisability
A brilliant end to Amy, Sarah & Heidi’s talk 👏 They shared a practical PPI toolkit for involving people with learning disabilities in health research. Such an important resource for making research more inclusive. #PPI #InclusiveResearch #LearningDisability
Great to hear from PPI co-leads Amy & Sarah & PPI member Heidi📢 They spoke about the challenges & opportunities in PPI health research, highlighting the importance of breaking down information, using pictures & making research truly inclusive. #PPI #InclusiveResearch
Brilliant to see @alidrewett presenting the 7 Design Rules✨They highlight good practice for research with people with learning disabilities. Co-created with our PPI team, the rules are fully inclusive & designed to be easily understood. #InclusiveResearch #AccessibleComms #PPI
The wonderful @AnnieBannister sharing her story as part of DECODE’s Family Carers Group💜 As a mum of 2 sons with learning disabilities, she is a crucial part of the DECODE team - her lived experience is invaluable in shaping research. Powerful to hear her perspective. #PPI
Ana, the graphic designer behind our infographics🎨, shared how visual style can reflect specific illnesses and why it must be tailored to the people it’s designed for. Her work revealed gaps in understanding & showed the importance of adapting processes. #InclusiveDesign
Ellie on the power of infographics in health research📊 Too often they’re cluttered & hard to understand. DECODE design infographics that carers & people with learning disabilities can use to better understand their health. #AccessibleComms #InclusiveResearch #LD #DECODE
Brilliant to hear from Nikki Harrison - paramedic🚑 & Makaton trainer, she spoke on the power of using Makaton - a communication programme combining speech, signs & symbols. Together, we developed a Makaton version of Maria’s Story to make it as inclusive as possible. #Makaton
In conversation with Orla Borsey (@lborouniversity alumni), the graphic designer behind Maria’s Story✨ It’s amazing to hear how she worked with the team - including our PPI members to develop graphics that are simple, clear & consistent. #InclusiveDesign #CoProduction
DECODE researcher @alidrewett on developing visual literacy: introducing the 7 Rules, co-created with our PPI team, giving practical considerations such as using pictures and simple terms. As Ali said: “Lived experience is crucial to research”💡 #CoProduction #AccessibleComms
Maria’s Story🎥 This animation shows how storytelling can bring health data to life - explaining health trajectories and the common pairing of conditions, grounded in personal experience. We want Maria’s story to be remembered. 💜 #InclusiveResearch #Storytelling #HealthData
A heartwarming presentation from Alix, one of our PPI members💜 She spoke about how DECODE has boosted her confidence, given her the chance to meet new people, and her role in our animation - where she is the voice of Maria! 🎙️✨ #PPI #InclusiveResearch #LearningDisability
Our very own Dr Satheesh Gangadharan is now sharing his personal story 💬 His experiences have been central to shaping the DECODE inclusion learning journey. #InclusiveResearch #LearningDisability #PPI @lborouniversity
Fancy a chat? Join us for a Care for a Cuppa session where you can spend time talking with others who understand the particular challenges you may face caring. See when our next session is: carersuk.org/help-and-advic…
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