"Help [OMF] define post-exertional symptom worsening and crashes based on how patients actually experience them, not just how they appear in research definitions."
Managing #PEM is critical to safe clinical practice.
#ME #Research #LongCovidME #PatientParticipation
docs.google.com/forms/d/e/1F...
Managing #PEM is critical to safe clinical practice.
#ME #Research #LongCovidME #PatientParticipation
docs.google.com/forms/d/e/1F...
CTN Lite Survey: Understanding Post-Exertional Symptom Worsening in ME/CFS
A Deep-Dive Patient Survey on Crashes, PEM, and What Meaningful Improvement Looks Like
Post-exertional symptom worsening (PEM/PESE/PENE) and crashes were the top priority for treatment research ident...
docs.google.com
August 26, 2026 at 6:07 AM
"Help [OMF] define post-exertional symptom worsening and crashes based on how patients actually experience them, not just how they appear in research definitions."
Managing #PEM is critical to safe clinical practice.
#ME #Research #LongCovidME #PatientParticipation
docs.google.com/forms/d/e/1F...
Managing #PEM is critical to safe clinical practice.
#ME #Research #LongCovidME #PatientParticipation
docs.google.com/forms/d/e/1F...
Physicians endorsed participation in principle, but daily practice still showed paternalism; patient questions were often read as mistrust, not sensemaking. #eHealth #PatientParticipation #DoctorPatientRelationship doi.org/10.2196/jmir...
https://doi.org/10.2196/jmir.8444
doi.org
September 19, 2026 at 4:58 PM
Physicians endorsed participation in principle, but daily practice still showed paternalism; patient questions were often read as mistrust, not sensemaking. #eHealth #PatientParticipation #DoctorPatientRelationship doi.org/10.2196/jmir...
#USA #healthfreedom #patientparticipation #healthliteracy
Benjamin Rush: A Founder, A physician and a Champion for Medical Choice
standforhealthfreedom.substack.com/p/benjamin-r...
Benjamin Rush: A Founder, A physician and a Champion for Medical Choice
standforhealthfreedom.substack.com/p/benjamin-r...
July 10, 2026 at 8:20 PM
#USA #healthfreedom #patientparticipation #healthliteracy
Benjamin Rush: A Founder, A physician and a Champion for Medical Choice
standforhealthfreedom.substack.com/p/benjamin-r...
Benjamin Rush: A Founder, A physician and a Champion for Medical Choice
standforhealthfreedom.substack.com/p/benjamin-r...
🔷 National Patient Participation Week 2025 🔷
This week we celebrate Patient Participation Group (PPG)
#PPGAwarenessWeek #PatientParticipation #PrimaryCare #CommunityEngagement #PatientVoice #NHS #HealthcareImprovement #PPG
This week we celebrate Patient Participation Group (PPG)
#PPGAwarenessWeek #PatientParticipation #PrimaryCare #CommunityEngagement #PatientVoice #NHS #HealthcareImprovement #PPG
June 4, 2025 at 8:49 AM
🔷 National Patient Participation Week 2025 🔷
This week we celebrate Patient Participation Group (PPG)
#PPGAwarenessWeek #PatientParticipation #PrimaryCare #CommunityEngagement #PatientVoice #NHS #HealthcareImprovement #PPG
This week we celebrate Patient Participation Group (PPG)
#PPGAwarenessWeek #PatientParticipation #PrimaryCare #CommunityEngagement #PatientVoice #NHS #HealthcareImprovement #PPG
Our newsletter is out!
📅 GBA Meeting: 9–10 April, Jena
📅 #Biobanking in #Pediatrics Webinar: 28 April
📅 #EBW25: Programme now live!
📝 Event reports + big news: Patient Commissioner endorses position paper on academic Biobanks & #PatientParticipation
👉 Read more (in German) tinyurl.com/bdefcncz
📅 GBA Meeting: 9–10 April, Jena
📅 #Biobanking in #Pediatrics Webinar: 28 April
📅 #EBW25: Programme now live!
📝 Event reports + big news: Patient Commissioner endorses position paper on academic Biobanks & #PatientParticipation
👉 Read more (in German) tinyurl.com/bdefcncz
March 26, 2025 at 1:01 PM
Our newsletter is out!
📅 GBA Meeting: 9–10 April, Jena
📅 #Biobanking in #Pediatrics Webinar: 28 April
📅 #EBW25: Programme now live!
📝 Event reports + big news: Patient Commissioner endorses position paper on academic Biobanks & #PatientParticipation
👉 Read more (in German) tinyurl.com/bdefcncz
📅 GBA Meeting: 9–10 April, Jena
📅 #Biobanking in #Pediatrics Webinar: 28 April
📅 #EBW25: Programme now live!
📝 Event reports + big news: Patient Commissioner endorses position paper on academic Biobanks & #PatientParticipation
👉 Read more (in German) tinyurl.com/bdefcncz
Strong support for #Biobank|s & #PatientParticipation: Patient Commissioner Stefan Schwartze, MdB, backs a key position paper by GBN & patient organisations pushing for early biobank involvement, long-term funding & stronger patient roles in research.
👉 More info: tinyurl.com/5868p9wz
#Biobanking
👉 More info: tinyurl.com/5868p9wz
#Biobanking
Patient Commissioner supports position paper
The paper, which contains key recommendations for strengthening academic biobanks and patient participation, has received political backing.
tinyurl.com
February 20, 2025 at 8:53 PM
Strong support for #Biobank|s & #PatientParticipation: Patient Commissioner Stefan Schwartze, MdB, backs a key position paper by GBN & patient organisations pushing for early biobank involvement, long-term funding & stronger patient roles in research.
👉 More info: tinyurl.com/5868p9wz
#Biobanking
👉 More info: tinyurl.com/5868p9wz
#Biobanking
#Observationalstudies #interventionaltrials #celltherapies #genetherapies #AI #clinicaltrials #integratedendtoendtrials #DCTmodels #interventionaltrialdesigns #digitaltechnologies #patientparticipation #virtualobservationalstudies #hybridobservationalstudies
pharmaphorum.com/patients/uni...
pharmaphorum.com/patients/uni...
Unifying observational research with a next-generation virtual approach
Explore the unification of observational research with a next-generation virtual approach in decentralised clinical trials (DCTs). Learn more about the benefits and advancements in this innovative met...
pharmaphorum.com
April 4, 2025 at 9:31 AM
No one seems to get to WHY the past years of analysis, meetings, presentations & papers haven't changed things enough. We are STILL talking about inclusion health projects & strategies instead of taking for granted as embedded best practice
#Inclusion #HealthCare #Involvement #PatientParticipation
#Inclusion #HealthCare #Involvement #PatientParticipation
February 7, 2025 at 11:18 AM
No one seems to get to WHY the past years of analysis, meetings, presentations & papers haven't changed things enough. We are STILL talking about inclusion health projects & strategies instead of taking for granted as embedded best practice
#Inclusion #HealthCare #Involvement #PatientParticipation
#Inclusion #HealthCare #Involvement #PatientParticipation
May 4, 2026 at 3:22 PM
#informedconsent on its way in the #USA #vaccine program.
#patientparticipation #patientempowerment #shareddecisionmaking #patientsafety
#patientparticipation #patientempowerment #shareddecisionmaking #patientsafety
October 6, 2025 at 6:21 PM
#informedconsent on its way in the #USA #vaccine program.
#patientparticipation #patientempowerment #shareddecisionmaking #patientsafety
#patientparticipation #patientempowerment #shareddecisionmaking #patientsafety
As part of the BMFTR-funded center CEPRE, we’ve released three new patient information videos, addressing key topics around unfulfilled desire to have children, chronic #endometritis, #ReproductiveResearch, women’s health, and #PatientParticipation 📽️👶⚕️🩸
🔗 www.uniklinikum-jena.de/cepre/Aktuel...
🔗 www.uniklinikum-jena.de/cepre/Aktuel...
CEPRE informiert: Videos zu Kinderwunsch, chronischer Endometritis und neuen Wegen in der Forschung
www.uniklinikum-jena.de
March 28, 2026 at 11:47 AM
As part of the BMFTR-funded center CEPRE, we’ve released three new patient information videos, addressing key topics around unfulfilled desire to have children, chronic #endometritis, #ReproductiveResearch, women’s health, and #PatientParticipation 📽️👶⚕️🩸
🔗 www.uniklinikum-jena.de/cepre/Aktuel...
🔗 www.uniklinikum-jena.de/cepre/Aktuel...
#ProofinPractice
Joined a panel on the important of Patient Participation Groups as a great gateway to create a research positive culture in practice. Very interesting.
#oxfordrcgprsc #cihorg #primarycare #london #proofinpractice2025 #patientparticipation #ppie
Joined a panel on the important of Patient Participation Groups as a great gateway to create a research positive culture in practice. Very interesting.
#oxfordrcgprsc #cihorg #primarycare #london #proofinpractice2025 #patientparticipation #ppie
November 27, 2025 at 1:33 PM
#ProofinPractice
Joined a panel on the important of Patient Participation Groups as a great gateway to create a research positive culture in practice. Very interesting.
#oxfordrcgprsc #cihorg #primarycare #london #proofinpractice2025 #patientparticipation #ppie
Joined a panel on the important of Patient Participation Groups as a great gateway to create a research positive culture in practice. Very interesting.
#oxfordrcgprsc #cihorg #primarycare #london #proofinpractice2025 #patientparticipation #ppie