OVERVIEW

Over many years, leading Patient Organizations (POs) have had ad hoc meetings with American College of Rheumatology (ACR) administrators to discuss ways to improve PO participation at its annual Fall scientific meeting, but little progress has resulted. However, in conjunction with recent participatory challenges that have been recognized related to registration and Association of Rheumatology Professionals (ARP) membership, these efforts have paved the way for new discussions. ACR leadership is ready to re-engage POs in conversations regarding improved involvement in future Convergence meetings. Given the ACR is undergoing a process to reshape the landscape of future Convergence meetings, including the discussion on expanded PO involvement is very timely.

We are collecting names of Patient Organizations in the arthritis and arthritis-related spaces - and our scientific allies - who are interested in uniting so, together, we can share our collective thoughts and perspectives with the ACR on this matter. As a result, we hope to improve and expand the role of POs at the ACR’s annual scientific meetings. Groups who focus on arthritis (all types) or whose disease group is related to arthritis diseases, are encouraged to sign on.

The ACR is fully aware and supportive of this initiative.



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ORIGINAL FULL LETTER

December 1st, 2021

American College of Rheumatology (ACR)
2200 Lake Boulevard NE
Atlanta, GA 30319

To: Donna Hoyne, Vice President, Education, American College of Rheumatology

Re:  Improving Arthritis Patient Organizations’ Involvement at the Annual American College of Rheumatology (ACR) Convergence Meeting

Dear Donna:

Congratulations on convening a second “virtual” annual scientific meeting – another heroic effort on the part of your team in the ongoing pandemic.

Over many years leading Patient Organizations (POs) have had ad hoc meetings with American College of Rheumatology (ACR) administrators to discuss ways to improve PO participation at its annual Fall scientific meeting, but little progress has resulted. Examples of very basic participation challenges POs face includes issues related to meeting registration and Association of Rheumatology Professionals (ARP) membership. We understand these specific challenges are now being addressed – we thank the ACR for its immediate attention to this matter – and are pleased that there is interest in broadening the discussion with the aim of improving on or developing new and more meaningful ways for POs to participate in Convergence meetings.

As discussed, the contribution of POs to the rheumatology landscape over the last several decades has evolved, and what each organization brings “to the table” varies. Therefore, to fully capture the depth of value POs can contribute, the undersigned groups have convened and are communicating to you as one so that we can all share our collective thoughts and perspectives on this matter. Given the ACR is undergoing a process to reshape the landscape of future Convergence meetings, including the discussion on expanded PO involvement is very timely.

To prepare for discussions and determine how we can best build on prior participation, we traced the history of the ACR annual meeting, as well as our contributions in them. It’s hard to imagine the ACR established the first annual scientific meeting almost a century ago. For decades persons in the rheumatology space have united with colleagues and experts worldwide to share revolutionary science and discuss timely topics around the prevention, diagnosis, and treatment of rheumatic diseases. (1) Then, in preparation for the 2020 annual scientific meeting, the COVID19 pandemic hit and the world as we know it changed forever. Fittingly, the name of the meeting changed to the ACR “Convergence: Where Rheumatology Unites”, symbolizing your dedication to inclusion and collaboration.

The role of the PO at the ACR’s annual scientific meeting has also evolved. For years, a primary purpose for our presence was to provide resources for other attendees (Exhibit Booth) and to share the breaking science with the people we are all supposed to serve – people around the world living with arthritis and related diseases. Over time, our involvement in the meeting increased dramatically. We have hosted, co-delivered and participated in education and scientific sessions.  But there's more we can do.  Many of us have also developed interactive dissemination strategies to relay information presented at the meeting back to the arthritis community and public. While some POs still fund research, many of us take on the role of research participant and go on to play essential roles in developing, implementing, and designing innovative research projects. (2) ACR’s mission is to improve the care of patients with rheumatic disease and advance the rheumatology subspecialty. We, and many of your members, believe POs play a vital role in advancing this mission as research partners, essential liaisons, knowledge translators, and dissemination “brokers” between scientific members and people with arthritis and the public. With an aim to improve and expand the role of POs at the ACR’s annual scientific meetings, the undersigned POs and scientific allies formally request an opportunity to have in-depth discussions with the ACR administration and the Convergence 2022 Planning Committee.

Donna, thank you and the ACR leadership again for your willingness to continue these discussions. Our organizations stand ready to work with you and the ACR membership to improve its meetings and expand the rheumatology “scientific village” in meaningful ways.

Sincerely,
 
Tiffany Westrich-Robertson
Chief Executive Officer
International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis)


CC: Sharon Kolasinski, 2021 ACR Planning Committee Chair
       Steven Echard, Executive Vice President, ACR
       ACR 2021 Convergence Planning Committee



1 - ACR Convergence 2021 Preview Video: The history of the ACR and future plans for improvement https://youtu.be/PGm_wb0150E
2-  Rheumatology ACTion Council: The Pathway of Patient Engagement in Rheumatology Research https://rheumactioncouncil.org/pathway/