@drandrewv2 that’s exactly what our #ExpertsByLivedExperience tell us and others. It’s SO EXHAUSTING to try to navigate the health care system. The most vulnerable fall through the gaps!
I’m so sorry that you had that experience (even if it is so terribly common). Sending big hugs and well done persevering so long! ❤️❤️
The #AIM #PPIE teams have worked very creatively to describe artificial intelligence #AI to people who don’t work in the field. There’s a lot of jargon and descriptions can be very abstract and inaccessible.
There is no meaningful consultation if the #ExpertsByLivedExperience don’t understand what you’re asking!
Next up we get to hear from one of the #ExpertsByLivedExperience - Alix - and two researchers - Amy Wilkins and Lizzie Renfy. Another expert by lived experience - John - has sent comments that Mon read out because his mobility conditions have flared up so he’s unable to attend in person.
He’s here online though. Making sure we are allowing EVERYONE to join a conference featuring people who are more vulnerable than others is a huge priority to me and the #AIMRSF team.
Mon played this beautiful video from the #DECODE project: Develop and Enhance the Care coordination for people with intellectual disabilities and multiple long term Conditions (DECODE).
https://www.youtube.com/@DECODEproject
A hugely moving set of interviews with people who are #ExpertsByLivedExperience and living with #MLTC describing how welcome they felt and how they have made such a positive difference to the research project.
Next up is Mon Fletcher who is introducing our session on Celebrating and recognising excellence in patient and public engagement and involvement #PPIE
She’s sharing collages of photos from just a few of our amazing contributors who are #ExpertsByLivedExperience.
“Research sometimes sits on dusty shelves and is too far away from the people who would actually benefit from the work.”
KirstieJane