Rheum ACTion Council

Attendees - Don't miss the 1st ever scientific session hosted at an American College of Rheumatology Convergence meeting aimed at helping rheumatologists, researchers, industry, and patient organizations who develop and conduct research projects that include patients as partners.

If in person, please add to your calendar - high attendance is needed to demonstrate the Convergence audience is interested in a session like this. Be part of history and support patient inclusion in rheum research project sessions in 2022 and beyond!

Saturday Nov 12 at 11am ET, Room 103

Several ACTion Council members will proudly be presenting our 1st deliverable from the Council, the Pathway of Patient Engagement in Rheumatology Research Tool - Tiffany Westrich-Robertson Aiarthritis from International Foundation for Autoimmune & Autoinflammatory Arthritis, Cheryl Koehn from Arthritis Consumer Experts, Maarten de wit from EULAR PARE, and Clayon Hamilton PhD with Kaleb Michaud from Forward, The National Databank for Rheumatic Diseases as the moderator.

Did you know there’s now a one-stop shop that tracks patient engagement in research?! Check it out now: https://rheumactioncouncil.org/

rheumactioncouncil The ACTion Council was established to retrace the history of patient engagement in rheumatology and record pivotal Concepts of Patient Involvement (CoPI), tools, and initiatives that have shaped its’ past and can help strengthen projects in the future.

Check out the 1st group of Organizations & Groups identified as part of initial patient engagement in research projects! Is YOUR name there? Should it be? Let us know! https://rheumactioncouncil.org/pathway/organizations/

Did you know Patient Research Partner/PRP & Mentor Assisted Research/MAR are Concepts of Patient Involvement (CoPIs) that were first put into use in research projects involving patients? Check it out! https://rheumactioncouncil.org/pathway/concepts

Glossary: Concepts of Patient Involvement (CoPIs) – rheumactioncouncil Concepts of Patient Involvement (CoPI) are generally overarching and established terminology associated with methods of engagement that involve patients in the research process. This Glossary is divided into three subgroups – General Terminology, Established Concepts, or Proper Names.

Do you know a researcher who values patient engagement in research, and wants to learn from the past to create best practices in inclusion? Share this post and ta them in the comments to let them know of this tool! https://rheumactioncouncil.org/

Arthritis Consumer Experts
Arthritis Research Canada
Bristol Myers Squibb
CreakyJoints
EULAR
U.S. Food and Drug Administration
Forward, The National Databank for Rheumatic Diseases
International Foundation for Autoimmune & Autoinflammatory Arthritis
LADAorg
European Patients' Academy on Therapeutic Innovation (EUPATI)
Patient-Centered Outcomes Research Institute - PCORI
NIHR
Canadian Spondylitis Association
LUPUS EUROPE

rheumactioncouncil The ACTion Council was established to retrace the history of patient engagement in rheumatology and record pivotal Concepts of Patient Involvement (CoPI), tools, and initiatives that have shaped its’ past and can help strengthen projects in the future.

Do you design patient-included research projects? Then check out this innovative tool that lists Patient Involvement Guidelines, Principles, Recommendations, Frameworks, and Instruments! https://rheumactioncouncil.org/pathway/guidelines-principles-recommendations-frameworks-instruments/

Arthritis Consumer Experts
Arthritis Research Canada
Bristol Myers Squibb
CreakyJoints
EULAR
U.S. Food and Drug Administration
Forward, The National Databank for Rheumatic Diseases
International Foundation for Autoimmune & Autoinflammatory Arthritis
LADAorg
European Patients' Academy on Therapeutic Innovation (EUPATI)
Patient-Centered Outcomes Research Institute - PCORI
NIHR
Canadian Spondylitis Association
LUPUS EUROPE

Glossary: Tools for Patient Involvement – Frameworks, Guidelines, Instruments, Recommendations, Reports – rheumactioncouncil Pathway Stop 2020 – Health Equity And Diversity, Front And Center Year 2020 [COVID19 Global Rheumatology Alliance, Research Abstract]

Do you know a researcher who values patient engagement in research, and wants to learn from the past to create best practices in inclusion? Share this post and tag them to let them know of this tool! https://rheumactioncouncil.org/

On The Pathway you’ll see “Research Contexts''. Contexts are general categories of topics associated with the research. https://rheumactioncouncil.org/pathway/context/

rheumactioncouncil.org

❓Do you know a researcher who values patient engagement in research, and wants to learn from the past to create best practices in inclusion?

❗️Retweet and let them know of this tool!

https://rheumactioncouncil.org/

rheumactioncouncil The ACTion Council was established to retrace the history of patient engagement in rheumatology and record pivotal Concepts of Patient Involvement (CoPI), tools, and initiatives that have shaped its’ past and can help strengthen projects in the future.

The Pathway of Patient Engagement in RheumatologyResearch is a tool, tracking firsts in patient involvement so we can learn from the past & help those designing future patient included projects https://rheumactioncouncil.org/

Want to know more about the Pathway? Or how the Rheum ACTion Council came to be? Listen to Cheryl, Maarten, and Tiffany at https://www.aiarthritis.org/talkshow-ep66

Rheum ACTion Council updated their business hours.

Check out the 1st tool from the Rheum ACTion Council - the Pathway of Patient Engagement in Rheumatology Research, launched to help improve patient collaboration in the research space! http://bit.ly/RheumPathwayIntro

Intro to the Pathway of Patient Engagement in Rheumatology Research First deliverable from the Rheum ACTion Council developed to help those designing and participating in patient collaborative research - specific to the rheumatology…

The patient ideated Pathway of Patient Engagement in RHEUMATOLOGY Research, developed by the Rheum ACTion Council, is launching this Friday June 25th during a free 30 minute webinar event 12pm ET/USA, 6pm CET/EU.

Trace the history of collaboration in our community, find novel firsts, guidance, reports & more. This tool aims to help those designing projects so, together, we can learn and build from past successes, avoid duplication of efforts, and increase measurements to demonstrate the value associated with incorporating patients into projects.

REGISTER FOR THE LAUNCH EVENT: https://bit.ly/RheumPathwayRSVP



Arthritis Research Canada Arthritis Consumer Experts EULAR American College of Rheumatology CreakyJoints European Patients' Academy on Therapeutic Innovation (EUPATI) EMA - European Medicines Agency U.S. Food and Drug Administration Forward, The National Databank for Rheumatic Diseases International Foundation for Autoimmune & Autoinflammatory Arthritis Lupus and Allied Diseases Association, Inc. LUPUS EUROPE

Welcome! You are invited to join a meeting: The ACTion Council Pathway. After registering, you will receive a confirmation email about joining the meeting. You are invited to join us as we officially launch the Pathway! The purpose of the initial Pathway is to trace the evolution of patient engagement in rheumatology research, including identifying historical milestones, novel “firsts”, and tools. Then, as patient involvement continues to populariz...

Thank you for the sneak peek Maartin de Wit! We appreciate all of your hard work. Stay tuned for more...

Rheum ACTion Council updated their website address.