#ppie — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #ppie, aggregated by home.social.
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Last week the #IncludeAge project invited to a day of sharing and celebrating. I enjoyed it very much and the #SeriousGame session facilitated by socialudo* was a great way to explore findings!
IncludeAge works with mid to older aged people with Learning Disabilities and/or who identify as LGBT+ to co-create understandings of inclusion and exclusion in everyday physical and online places and spaces:
https://includeage.co.uk/ -
Last week the #IncludeAge project invited to a day of sharing and celebrating. I enjoyed it very much and the #SeriousGame session facilitated by socialudo* was a great way to explore findings!
IncludeAge works with mid to older aged people with Learning Disabilities and/or who identify as LGBT+ to co-create understandings of inclusion and exclusion in everyday physical and online places and spaces:
https://includeage.co.uk/ -
Last week the #IncludeAge project invited to a day of sharing and celebrating. I enjoyed it very much and the #SeriousGame session facilitated by socialudo* was a great way to explore findings!
IncludeAge works with mid to older aged people with Learning Disabilities and/or who identify as LGBT+ to co-create understandings of inclusion and exclusion in everyday physical and online places and spaces:
https://includeage.co.uk/ -
Last week the #IncludeAge project invited to a day of sharing and celebrating. I enjoyed it very much and the #SeriousGame session facilitated by socialudo* was a great way to explore findings!
IncludeAge works with mid to older aged people with Learning Disabilities and/or who identify as LGBT+ to co-create understandings of inclusion and exclusion in everyday physical and online places and spaces:
https://includeage.co.uk/ -
The Alberta PROMs and #EQ5D Research and Support Unit (APERSU) is an initiative that operates across the health system. Read about the development of its patient engagement network, that aims to connect those whose experiences collectively reflect the broad scope of PROMs use in Alberta:
https://link.springer.com/article/10.1186/s41687-026-01001-8 -
Great day at our Postgraduate Research Symposium at the School of #HealthSciences #DundeeUni !
21 presentations across such diverse topics as breastfeeding, the Dysphoric Milk Ejection Reflex, #MentalHealth literacy, stigma of mental illness, the nursing curriculum, #PPIE in #RCTs, skin to skin care, traumatic birth and... and... 👏
Great opportunity to welcome new students, and to see projects develop over the years.
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Great day at our Postgraduate Research Symposium at the School of #HealthSciences #DundeeUni !
21 presentations across such diverse topics as breastfeeding, the Dysphoric Milk Ejection Reflex, #MentalHealth literacy, stigma of mental illness, the nursing curriculum, #PPIE in #RCTs, skin to skin care, traumatic birth and... and... 👏
Great opportunity to welcome new students, and to see projects develop over the years.
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Great day at our Postgraduate Research Symposium at the School of #HealthSciences #DundeeUni !
21 presentations across such diverse topics as breastfeeding, the Dysphoric Milk Ejection Reflex, #MentalHealth literacy, stigma of mental illness, the nursing curriculum, #PPIE in #RCTs, skin to skin care, traumatic birth and... and... 👏
Great opportunity to welcome new students, and to see projects develop over the years.
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Great day at our Postgraduate Research Symposium at the School of #HealthSciences #DundeeUni !
21 presentations across such diverse topics as breastfeeding, the Dysphoric Milk Ejection Reflex, #MentalHealth literacy, stigma of mental illness, the nursing curriculum, #PPIE in #RCTs, skin to skin care, traumatic birth and... and... 👏
Great opportunity to welcome new students, and to see projects develop over the years.
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Great day at our Postgraduate Research Symposium at the School of #HealthSciences #DundeeUni !
21 presentations across such diverse topics as breastfeeding, the Dysphoric Milk Ejection Reflex, #MentalHealth literacy, stigma of mental illness, the nursing curriculum, #PPIE in #RCTs, skin to skin care, traumatic birth and... and... 👏
Great opportunity to welcome new students, and to see projects develop over the years.
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How to engage w collaborators in health state valuation, how to include their voices?
https://link.springer.com/article/10.1007/s40273-025-01550-8Based on 37 guidance documents and studies, the team develops a 15pt framework for developing guidance to improve practice in the field.
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Roughly 2 weeks left to submit to JPRO's #SpecialIssue
"Patient and Public Involvement and Engagement"
https://www.springeropen.com/collections/PPIE
#PPIEThe aim is to capture the use of Patient and Public Involvement and Engagement (#PPIE) in Patient-Reported Outcome-related research, such as the development of PRO measures and electronic PRO (ePRO) systems, as well as the implementation of PRO measures for healthcare research and clinical practice.
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We have a double presentation at the end of this session: Simon Fraser PI MELD-B & Lynn Laidlaw PPI representative.
Their presentation is titled: Lost in translation? Looking for the lived experience of multiple long-term conditions in data
They share how the team moved away from talking about #burden to talking about the #workload of living with #MLTC. Their #PPIE contributors were allowed to make a difference to the project. And as Lynn says “language matters”.
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We have a double presentation at the end of this session: Simon Fraser PI MELD-B & Lynn Laidlaw PPI representative.
Their presentation is titled: Lost in translation? Looking for the lived experience of multiple long-term conditions in data
They share how the team moved away from talking about #burden to talking about the #workload of living with #MLTC. Their #PPIE contributors were allowed to make a difference to the project. And as Lynn says “language matters”.
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We have a double presentation at the end of this session: Simon Fraser PI MELD-B & Lynn Laidlaw PPI representative.
Their presentation is titled: Lost in translation? Looking for the lived experience of multiple long-term conditions in data
They share how the team moved away from talking about #burden to talking about the #workload of living with #MLTC. Their #PPIE contributors were allowed to make a difference to the project. And as Lynn says “language matters”.
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We have a double presentation at the end of this session: Simon Fraser PI MELD-B & Lynn Laidlaw PPI representative.
Their presentation is titled: Lost in translation? Looking for the lived experience of multiple long-term conditions in data
They share how the team moved away from talking about #burden to talking about the #workload of living with #MLTC. Their #PPIE contributors were allowed to make a difference to the project. And as Lynn says “language matters”.
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We have a double presentation at the end of this session: Simon Fraser PI MELD-B & Lynn Laidlaw PPI representative.
Their presentation is titled: Lost in translation? Looking for the lived experience of multiple long-term conditions in data
They share how the team moved away from talking about #burden to talking about the #workload of living with #MLTC. Their #PPIE contributors were allowed to make a difference to the project. And as Lynn says “language matters”.
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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!
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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.”
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Added today to SFMemory.org! 158 new old images from the Emiliano Echeverria / Randolph Brandt collection. I real mix of stuff from the 1915 Panama-Pacific International Expo, Early 70's Market Street Muni construction, Key System Accidents, Ferries https://sfmemory.org/search/index.php?q=sfm011&_ds=1&bn=0&bs=50&so0=contains&so1=contains #sfhistory #oaklandhistory #ppie
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CW: Patient Involvement in Research
Interesting set of case studies from the British Society for Immunology on the benefits of involving patients and members of the public in COVID-19 research. Useful addition to the evidence base.
#PPIE #COVID19 #Researchhttps://www.immunology.org/news/new-report-involving-patients-and-members-public-covid-19-research
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Now I’ve been around for a month, I think I should expand on my #introduction a bit.
Seems I toot a lot about #smallholding and very little about #LivedExperience (specifically #PPIE and #CoCreation in research). On reflection, it’s because I am still a bit burned by bird place, but I’m very much interested in hanging out in those spaces.
My #UnpaidCarer life is complicated but essential and it’s part of who I am, not something I ‘do’. Social media lets me socialise when real life doesn’t!