The @ISTAART Partnering with Research Participants PIA supports best practices to integrate the lived experience of people with dementia.
Joined November 2022
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🎉🎉Happy birthday Partnering with Research Participants PIA!!🎉🎉
From left to right, our very own @HelenMedsger, @SarahW_research @DrKaramacoska @IracemaLeroi & Sandra Loyola-Sandoval in beautiful #Amsterdam celebrating 1 year 🎂of @ISTAART #PPI 🥂🥂
#AAIC2023
ParticipantPIA retweeted
Our future doctors, nurses, Physios, and researchers come from great establishments like University College Cork (UCC), and it was an honour to talk to our future, lecturers, professors, and world leading researchers.
@ParticipantPIA
Send over your stories involving people with lived experience of dementia!
Share your strategies, stories and successes in partnering with participants in intervention studies at #AAIC24. Dm for more details! Only 300 words by Dec 29 #inclusivescience #research #alzheimers #publicinvolvement @DorisMolinaHen @ParticipantPIA @Aida_Suarez_ @CGster
ParticipantPIA retweeted
Share your strategies, stories and successes in partnering with participants in intervention studies at #AAIC24. Dm for more details! Only 300 words by Dec 29 #inclusivescience #research #alzheimers #publicinvolvement @DorisMolinaHen @ParticipantPIA @Aida_Suarez_ @CGster
ParticipantPIA retweeted
So thrilled to hear that researchers are now sharing individual research results to #ADRC participants. Progress! Listening to your participants matters and will change the way you do science. @ParticipantPIA
Join @GBHI_Fellows & the @PPI_Ignite_Net for an exploration of Public & Patient Involvement & Engagement (PPIE) in dementia research—with perspectives provided by #AtlanticFellows & PPIE participants from Africa, Europe & South America.
linkedin.com/feed/update/urn…
ParticipantPIA retweeted
📢Ignite Insight seminar series.
Made by PhD scholars, for PhD scholars.
Online and in-person events throughout October.
Learn how PPI can help your research and your career, hearing from those interested in PPI in all walks of life.
To find out more: tinyurl.com/mtz5cmkc
ParticipantPIA retweeted
Chairperson of European Dementia Carers Working Group #EDCWG @SMaciulskyte takes part in #WorldAlzheimersMonth panel discussion at Lithuanian Parliament focusing on the importance of a national dementia strategy
alzheimer-europe.org/news/so…
ParticipantPIA retweeted
This is also the face of PPI.
@ParticipantPIA
Our members work so hard but there's always time for a smile, a laugh and even the occasional song #UnderstandTogether #DementiaSupports
ParticipantPIA retweeted
Love this!
@ParticipantPIA @Aida_Suarez_
ParticipantPIA retweeted
Barker 2000: Technology may permit us to develop the means to prolong life, reshaping our bodies to eliminate disease. The risk we face, perhaps, is that the human experience that marvels at everything from the sunset and warm rain… (cont) #research @ParticipantPIA
ParticipantPIA retweeted
“If I don’t who will.” That’s what PPI is all about. Those with lived experience putting themselves out there, even when it’s hard. Research needs to listen.
@ParticipantPIA
@Aida_Suarez_
Our brave and amazing advocate Frank Jennings and his wife Angela spoke today on @TodaywithClaire When asked to be interviewed he replied 'I have to, if I don't who will?'The world is a better place thanks to advocates like Frank #DementiaSupports #TODAYCB #Dementia2023
ParticipantPIA retweeted
A new book “challenging assumptions around dementia” is available for free using this link!! @ParticipantPIA #researchparticipants #ENDALZ
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ParticipantPIA retweeted
Let’s create inclusive research by building Partnership with our participants in research! Webinar hosted by Latin American and Caribbean consortium @DrRAshworth @ParticipantPIA @latiname
ParticipantPIA retweeted
A close collaborator and research participant’s view of the new blood test for Alzheimer’s by Quest. Results that indicate risk for dementia must show evidence of accuracy with peer reviewed data and provide counseling and support! #endalz @ParticipantPIA
ParticipantPIA retweeted
Sharing our work co-designing resources for and with people with dementia and carers to help with medication management when in hospital and at discharge.
Lots of fantastic insights and chats at #AAIC23 on more ways to partner with people with dementia and carers in research.
ParticipantPIA retweeted
Come to poster 580 to hear what participants want to happen to their individual research results (YUP - they want them back!!) My dear friend and ACTC advisor, Cynthia Huling Hummel is coauthor and here for #AAIC23 #makescienceinclusive @ParticipantPIA
ParticipantPIA retweeted
I've been involved in the development of PPI since its inception @ GBHI... so honored to elevate the Lived Experience Group, along with 5 other projects @ AAIC2023.
ParticipantPIA retweeted
How do you build trust while involving PPI in your dementia research? Combine researchers, clinicians, those LWD and their carers/supporters through Walking the Talk for Dementia... fresh perspectives touched by the insights and experience of fellow walkers...
@GBHI_Fellows
ParticipantPIA retweeted
It was energizing to interact with young researchers discussing trust building in the development of PPI. Important questions and answers. 100% hope to carry it forward into practice.
@HelenMedsger & @DrKaramacoska facilitating our @ParticipantPIA workshop on how to partner with research participants. Gave important insights such as conducting focus groups to identify research priorities, define questions, and design projects!
