The @ISTAART Partnering with Research Participants PIA supports best practices to integrate the lived experience of people with dementia.
Joined November 2022
- Tweets 121
- Following 33
- Followers 122
- Likes 39
42 Photos and videos
Pinned Tweet
16 Jul 2023
🎉🎉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
1
9
715
ParticipantPIA retweeted
20 Feb 2024
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
1
125
17 Dec 2023
Send over your stories involving people with lived experience of dementia!
15 Dec 2023
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
1
187
ParticipantPIA retweeted
15 Dec 2023
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
1
412
ParticipantPIA retweeted
19 Oct 2023
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
2
6
304
18 Oct 2023
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…
4
64
ParticipantPIA retweeted
3 Oct 2023
📢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
1
21
36
6,464
ParticipantPIA retweeted
4 Oct 2023
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…
1
9
19
875
ParticipantPIA retweeted
4 Oct 2023
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
2
2
202
ParticipantPIA retweeted
4 Oct 2023
Love this!
@ParticipantPIA @Aida_Suarez_
2 Oct 2023
Perfect words @Sarah McLoughlin
1
77
ParticipantPIA retweeted
30 Sep 2023
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
1
1
149
ParticipantPIA retweeted
30 Sep 2023
“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
2
10
601
ParticipantPIA retweeted
1 Sep 2023
A new book “challenging assumptions around dementia” is available for free using this link!! @ParticipantPIA #researchparticipants #ENDALZ
1
1
270
ParticipantPIA retweeted
5 Sep 2023
Let’s create inclusive research by building Partnership with our participants in research! Webinar hosted by Latin American and Caribbean consortium @DrRAshworth @ParticipantPIA @latiname
1
1
5
364
ParticipantPIA retweeted
7 Sep 2023
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
2
4
333
ParticipantPIA retweeted
19 Jul 2023
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.
2
5
30
1,861
ParticipantPIA retweeted
19 Jul 2023
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
1
10
367
ParticipantPIA retweeted
17 Jul 2023
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.
17 Jul 2023
Luciano Inácio Mariano: Developing a Patient and Public Voice/Involvement (PPV/I) program at the Global Brain Health Institute (GBHI) with global impact.
2
7
549
ParticipantPIA retweeted
17 Jul 2023
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
17 Jul 2023
1
8
210
ParticipantPIA retweeted
17 Jul 2023
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.
17 Jul 2023
@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!
1
5
338