Patient organizations involvement in healthcare: a rapid review and conceptual framework
Arianna Gentilini, Iva Parvanova, Samra Ghazi, Kristy M. Scarfone & Jillian Kohler
link.springer.com/article/10.1...
#COI #CDoH #Pharma #PPI #PPIE #PatientAdvocacy #Healthcare
FREE Public Collaborator Training: Reviewing Plain English Summaries (or Lay Summaries) Thursday, 21 May 2026, 1pm to 2.30pm Aimed at members of the public who would like to contribute to the research process: bit.ly/4bTVYEq #PPIE #PPI #Training #PrimaryCare #Research @oxprimarycare.bsky.social
FREE Public Collaborator Training: Reviewing Plain English Summaries (or Lay Summaries) Thursday, 21 May 2026, 1pm to 2.30pm
Aimed at members of the public who would like to contribute to the research process: bit.ly/4bTVYEq
#PPIE #PPI #Training #PrimaryCare #Research
@oxprimarycare.bsky.social
We recently celebrated 5 years of PPIE at PenARC – and looked ahead to what’s next for ARC South West.
Lots of thoughtful conversations about inclusion, impact, & how we make sure research reflects what matters most to people.
Read more here 👇
bit.ly/4dgyxGN
#PPIE #CoProduction #HealthResearch
The SPCR recently hosted a masterclass titled “Engaging people experiencing socioeconomic deprivation in research.” Webinar slides and link to the recording is now available for viewing: https://www.spcr.nihr.ac.uk/news/spcr-masterclass-recording-engaging-people-experiencing-socioeconomic-deprivation #SPCR #PPIE #PrimaryCare #Research
The SPCR recently hosted a masterclass titled “Engaging people experiencing socioeconomic deprivation in research.” Webinar slides and link to the recording are now available for viewing: www.spcr.nihr.ac.uk/news/spcr-ma...
#SPCR #PPIE #PrimaryCare #Research
No Ethics Needed? Towards an Ethics of Care for Public and Patient Involvement and Engagement
Kanwal Mand, Anna Lavis, Melissa Stepney, Roisin Mooney, Kam Bhui
onlinelibrary.wiley.com/doi/full/10....
#Ethics #PPI #PPIE
📖 NEW RESOURCE: A new Public Collaborator Training and Development Booklet has been soft launched to strengthen the skills, confidence, and knowledge of people involved in patient and public involvement (PPI) in research: https://bit.ly/4uGy1bc #SPCR #PrimaryCare #PPI #PPIE #Research
📖 NEW RESOURCE: A new Public Collaborator Training and Development Booklet has been soft launched to strengthen the skills, confidence, and knowledge of people involved in patient and public involvement (PPI) in research: bit.ly/4uGy1bc
#SPCR #PrimaryCare #PPI #PPIE #Research
FREE Public Collaborator Training: Reviewing Plain English Summaries (or Lay Summaries) Thursday, 21 May 2026, 1pm to 2.30pm Aimed at members of the public who would like to contribute to the research process: https://bit.ly/4bTVYEq #PPIE #PPI #Training #PrimaryCare #Research @oxprimarycare.bsky.social
FREE Public Collaborator Training: Reviewing Plain English Summaries (or Lay Summaries) Thursday, 21 May 2026, 1pm to 2.30pm
Aimed at members of the public who would like to contribute to the research process: bit.ly/4bTVYEq
#PPIE #PPI #Training #PrimaryCare #Research
@oxprimarycare.bsky.social
FREE Public Collaborator Training: What is the research process? Tuesday, 24 March 2026, 1pm to 2.30pm Join us for an introduction to the research process & discuss practical examples of involvement that can happen along the way: https://bit.ly/4dxEZcm #PPIE #PPI #Training #PrimaryCare #Research
FREE Public Collaborator Training: What is the research process? Tuesday, 24 March 2026, 1pm to 2.30pm
Join us for an introduction to the research process & discuss practical examples of involvement that can happen along the way: bit.ly/4dxEZcm
#PPIE #PPI #Training #PrimaryCare #Research
🎉 Delighted to announce our PPIE team has been shortlisted for a UoA Principal’s Prize for Research Excellence!
A wonderful reminder of what's possible when we work together as true partners! 🙏
www.abdn.ac.uk/students/eve...
#PPIE #PatientAndPublicInvolvement #UniversityOfAberdeen
🥳 Speaking to MedTech about #epilepsy, #depression, #Parkinsons & #Alzheimers and our #PPIE work at the international Advanced Research & Invention Agency (ARIA) neurotech summit with tremendous colleagues Jon Nelson, Kuhan Pushparatnam, and Trevor Salomon 🤩🤩🤩!
At the National Space Centre! 🚀
Richard’s stroke happened four and a half years ago and abruptly changed an active life. To watch the full story, follow the link in our bio.
#StrokeRecovery #NeuroRehabilitation #XRRehabilitation #DigitalHealth #PatientStories #CoDesign #PPIE #MedTech #TeleHealth #TeleHealth #XR #XRneurorehab
Today we're celebrating the 4th anniversary of the Shared Commitment to Public Involvement 🎉
We are grateful to be part of a community working together to make public involvement stronger & more meaningful. More here: bit.ly/4liVZoN
#PPIE #SharedCommitment @nihr.bsky.social @hralatest.bsky.social
Last week we hosted the @kingshealth.bsky.social Rare Disease Network PPIE event at @kingscollegelondon.bsky.social.
Patients, researchers, clinicians, charities and industry came together to discuss one key question:
How do we make rare disease research truly inclusive?
#RareDisease #PPIE
🔗To see the full poster visit: www.iamcharlene.com
🧡
#PatientLedResearch #RareDisease #RareDiseaseResearch #PosterPresentation #ResearchCommunity #RareCancer #IAmCharlene #RareGems #BionicWarrior #PPI #PPIE #PatientInvolvement
An great opportunity to explore #PPIE in #healthresearch with the excellent @penarc.bsky.social team.
Registration is now open for the PPIE Summer School!
Exeter | 1–3 July 2026
A 3-day, in-person event bringing together researchers & public contributors to explore meaningful involvement in health & care research.
Find out more: tinyurl.com/37x32cy4
#PPIE #HealthResearch
Over the coming days and weeks, we'll be sharing some more opportunities to get involved in research through our #JIA VIP Research panel.
So if you haven't already signed up, you can join the 280 families who are already part of the panel at www.jarproject.org/vip/families
#PPIE
A graphic featuring an image of people meeting up and having a cup of tea, sitting outdoors in a circle. Text reads: Public voices are embedded at the heart of decisions about how NHS data is accessed and used. NHS South West Secure Data Environment, part of the NHS Research Secure Data Environment Network.
📣 The South West SDE is putting public voices at the heart of NHS data decisions. Our new #PPIE strategy, co‑produced with our #DigitalCriticalFriends, sets out how we embed transparency and ethics in decision‑making.
www.southwestsde.nhs.uk/public-invol...
#DataSavesLives #PoweredByNHSData
Friday March 6th the @kingshealth.bsky.social Rare Disease Network will be hositing a #PPIE Event focused on demystifying the connection between patients, researchers and industry, strengthening the partnerships that drive inclusive and impactful rare disease research.
tinyurl.com/khprdnppie
We spent the morning at PenARC’s PPIE Celebration event. From highlights & shared successes to interactive sessions, there’s huge pride in what’s been achieved & real ambition for the future. Five years of impact, collaboration and learning to build on💬✨
Stay tuned for more reflections!
#PPIE
How can we better support people with dementia as active partners in research? 🧠 Our latest SPCR masterclass, “Let’s Talk Dementia,” explored inclusive communication strategies to strengthen research partnerships: https://bit.ly/4aQmnl0 #DementiaResearch #InclusiveResearch #PPIE #PrimaryCare #Research
How can we better support people with dementia as active partners in research? 🧠 Our latest SPCR masterclass, “Let’s Talk Dementia,” explored inclusive communication strategies to strengthen research partnerships: bit.ly/4aQmnl0
#DementiaResearch #InclusiveResearch #PPIE #PrimaryCare #Research
Increasing diversity in research participation: A good practice guide for engaging with underrepresented groups.
www.england.nhs.uk/aac/wp-conte...
#researchparticipation #PPIE #diversity
Clear and consistent reporting of the involvement of patients and the public is essential for building trust and improving research quality. Our work highlights the need for universities and research institutes to reflect on the practice and provide better support for #PPIE
We worked alongside a group of patient co-authors to better understand our findings and together we developed 7 recommendations to help improve future reporting of #PPIE in research and inclusion of #PPIE in publishing. We created a flow diagram to show them visually
Our study looked at over 500 research papers published by authors from @qmul-wiph.bsky.social at @qmul.bsky.social to see how well #PPIE was reported.
1 in 5 papers mentioned how PPIE were involved within the main text of the paper, 10% included a plain English summary & nearly all were open access
I’m really excited to be able to share the early access version of our new review: A rapid evaluation of the reporting and publishing practices of #PPIE in health research within a UK university institute. Published #OpenAccess in Research Involvement and Engagement rdcu.be/e4VAX
The webinar-hosted by @skourkos.bsky.social & @elspethma.bsky.social was part of an 'Importance of #PPIE in Research' series organised by @arceastofengland.bsky.social @arc-southlondon.bsky.social & @penarc.bsky.social.
Recording & notes will be posted here: arc-eoe.nihr.ac.uk/importance-p.... 2/2
📣3 days left for extended abstract deadline Feb 20th!
Join us on March 6th at at King's College London Strand Campus Great Hall for the @kingshealth.bsky.social #RareDisease Network #PPIE event
#RareDiseaseDay
@kingscollegelondon.bsky.social @gstt-nhs.bsky.social @medicsforrare.bsky.social
Website redevelopment for NIHR SSCR, combining accessibility, usability and bespoke functionality. Designed around real user needs and built to support research dissemination and engagement at scale.
#NIHR #webdevelopment #websitedesign #research #ppie
The Alberta PROMs and #EQ5D Research and Support Unit operates across the health system. Read about the development of its engagement network, that aims to connect those whose experiences reflect the broad scope of PROMs use in Alberta
link.springer.com/article/10.1...
#PPIE #PatientCentered #HRQOL
