Karen Woolley

Same, same, but (quite) different.
1st comparison of #PubMed vs #EuropePMC for #PatientAuthor pubs.
Same = can search both
Same = rapid increase clear
Different = 2x difference in output
We need research on research methods to advance patient authorship!
@ismpp.bsky.social @bmj.com @jama.com

The Peer Review Congress celebrates the life of Drummond Rennie. His intellect and vision created the Congress and the field of meta-research, and sustained both for over 40 year. He was a champion of inclusion, a consummate teacher, and a wonderful friend who enriched us all. Godspeed Drummond.

Slide showing stats on reasons for misconduct vs gender This figure is also available in the linked PLOS ONE paper, as Figure 2 "Women’s representation among authors of retracted papers, stratified by reason for retraction."

ACPG: Retractions for misconduct or ethical/legal reasons had an underrepresentation of women. Gender equality might enhance research integrity.
Limitations: assigning gender based on names.
Discussion: are women more clever, and not caught? :-)
Paper: journals.plos.org/plosone/arti...
#PRC10

Two maps of the world, top one colored for mean retraction rates per 10,000 articles, the bottom one showing mean democracy index.

ASM: Higher democracy scores were associated with lower retraction rates (per 10,000 publications).
GDP per capita was positively associated with retraction rates, suggesting better detection mechanisms in wealthier, more effectively governed countries.
#PRC10

Well done PxP for such a practical tool to help #patients read peer-reviewed scientific #publications. | Karen Woolley Well done PxP for such a practical tool to help #patients read peer-reviewed scientific #publications. The guidance on the #PatientAuthor affiliation should make it easier for (more) patient-authored ...

Awareness of the importance of using #PatientAuthor as one affiliation is increasing. Best way to find patient-authored publications...with patient authors' permission. Transparency helps! www.linkedin.com/feed/update/...

Seek and Ye Shall Not Find (Yet): Searching Clinical Trial Registries for… | Karen Woolley Having recently cycled across Morocco and receiving a life-changing phone call at the finish, please allow me to misquote a Casablanca classic [three times]: 1. "I am shocked - shocked - that th...

And here is a LinkedIn post with some background information on the reason for the publication... www.linkedin.com/feed/update/...

Link to AI-generated podcast here (as human authors, we think the bots nailed it!) doi.org/10.6084/m9.f...

Seek and Ye Shall Not Find (Yet): Searching Clinical Trial Registries for Trials Designed With Patients—A Call to Action Clinical trial registries were designed to help patients search for potentially suitable clinical trials. When our family faced another serious cancer diagnosis, we searched multiple international cli...

One of the most important papers I have had the privilege (& burden) to HAVE to have published. Is this one of the most glaring and fixable gaps in #clinicaltrialregistries? See comment for links to a podcast & further details. doi.org/10.2196/72015

Perfect update on the update! Will be referring researchers, including patient researchers, to the site.

May reporting guideline updates for #PPI continue! Well done to #CONSORT & #SPIRIT (2025) #CHEERS (2022). Why not other main study types? Is #PRISMA next re, evidence of PPI value in systematic reviews (Zhou Q J Clin Epid 2024) @equatornetwork.bsky.social @ismpp.bsky.social

Great to see SPIRIT 2025 update w #PPI reporting. Hoping to see update of websites on/referring to SPIRIT - 2013 is out of date now. @equatornetwork.bsky.social

International #ClinicalTrialsDay 2025 - will 2026 see a better way for #patients to find trials they (& other patients) trust? Our 'call-to-action' publication identifies a gap in registries that should be fixed. #CTD2025 #PPI

What if the flip happens? A patriarchal dismissal of #Patient involvement in #publications might be dismissed sooner than (some) people think. Ready to adapt processes, practices & attitudes? #PatientAuthor #PlainLanguageSummary
@ismpp.bsky.social

New CONSORT guidelines and PPI reporting | Karen Woolley Game-changed and short-changed in one hit? The new CONSORT guidelines for reporting patient and public involvement (PPI) The CONSORT Statement 2025 is an absolute game-changer for reporting PPI, but...

Game-changed and short-changed in one hit??
Some thoughts on the new #CONSORT guideline and #PPI reporting... tinyurl.com/ydxk8prb

Author fees and waivers How to disclose, apply, and administer author fees and waivers, discounts, or incentives. And how to maintain the independence of editorial decision making.

NEW! How do journals' fee waivers affect #PatientAuthor publications?
"Waivers to those in financial need should be considered regardless of geography (country),discipline, or affiliation of the author." @ismpp.bsky.social
publicationethics.org/guidance/gui...

Power in patient partnerships.
Do you have it? Do you share it?
Don’t underestimate the power of power.
Our preprint is live.

doi.org/10.31219/osf.i…

@JanelleBowden @PGee51 @alexhaagaard @anitarena @anetto @CodiePrimeau @ATricco @KT_trainee @LLi_1 @HettyMulhall

A patient-authored publication a day keeps tokenism (& paternalism) away.
It's so hard to change medical #publications - until we do. Kudos #PatientAuthor pioneers & allies! #PPI @ismpp.bsky.social @envisionpharma.bsky.social
@amicascientific.com @bmj.com @amyprice.bsky.social

The End of Search, The Beginning of Research The first narrow agents are here

Man-made paywalls block artificial intelligence (& humans too!) #OpenAccess
"AI can only access what it can find and read in a few minutes, and paywalled articles remain out of reach - this represents a fundamental shift in how AI can engage with academic literature." tinyurl.com/yckctfdb

Mush mush #MeSH? Time to introduce a MeSH Term for 'Patient and Public Involvement' #PPI? Diverting to 'Patient Participation' (MeSH term est 1978) takes patients back to passive vs active role in research. Would help w MeSH On Demand re. related pubs too!
@ismpp.bsky.social @nihr.bsky.social #PPI

THIS...in such an international & influential document!
3.1 TRIAL DESIGN.
3.1.3 Sponsors should consider inputs from a wide variety of interested parties, for example, healthcare professionals and PATIENTS, to support the DEVELOPMENT PLAN and clinical trial PROTOCOLS... ich.org/news/ich-e6r...

What's a new year without new #ISMJE recommendations? Not too many changes, but always worth another read. icmje.org/news-and-edi...

Karen Woolley standing in her lab coat in the waters of Lake Weyba Australia

Picture of Lake Como and the Bellagio Center in Italy

First post. I think it's worthy.
Beyond excited, beyond grateful...THANK YOU
@rockefellerfdn.bsky.social for selecting me as a Bellagio Center Resident in 2025. Honoured & humbled (!) to follow Ruth Bader Ginsburg, Maya Angelou, Mary Robinson et al! Re-read those names! #RFBellagioResident