Consumer Advisory Council big hit in Paris: EULAR conference report

The 9th annual Congress for the European League Against Arthritis (EULAR) took place in Paris from June 11th to 14th. This was the largest conference related to arthritis in the world and according to EULAR President, Prof. Ferdinand C. Breedveld from the Netherlands, their goal was to “educate the world” about arthritis.

Delia Cooper and I, Consumer Advisory Council (CAC) members of the Canadian Arthritis Network (CAN) submitted an abstract for a poster presentation on the CAC model in CAN. We were successful. Our abstract was accepted, and an invitation to attend the Paris conference was extended to us. Our goal was to disseminate information on the CAC’s activities within CAN and to encourage participants from other countries to borrow ideas from our model for implementation within arthritis community. We also hoped to take away valuable tools for use in Canada.

Thirteen thousand people attended the EULAR conference. The venue was spread over four floors with presentations on scientific and clinical innovations as well as practical and special interest areas, many were delivered in concurrent sessions. Our poster was located in the PARE (Patients Against Arthritis and Rheumatism in Eular) area of the conference center. This was fortuitous as it meant that our poster was available for 3 full days with a 2-hour period dedicated to Poster viewing daily.

The first day seemed to be the busiest. All the copies of the poster disappeared and our business cards needed to be replaced each time we returned from attending an educational session. We networked with consumers and other health related individuals working in the realm of arthritis from many different countries: United Kingdom, Netherlands, Sweden, Norway, Germany, Hungary, United Arab Emirates, Cyprus, Northern Ireland, United States and Australia as well as the EULAR PARE Executive Secretariat, Florian Klett. Press agent, Mikko Vaisanen from the Eular Health Professionals News, interviewed us. We hope to see an article about the CAC in their next edition. We were asked many questions about the CAC. Some of the most common related to recruitment and training, and confidence building when interfacing with the research/clinical community. Several participants had questions about the roles of consumers within research. All were pleased to receive the CAC’s “Guide for Researchers and Consumers”.

Jan Bagge, a consumer from Sweden stressed the point that in a democratic society it is an ethical obligation to involve consumers in having some control and decision making over their future. Sweden is debating the issue of including consumers more fully in their research programs.

The experience and knowledge we have acquired as members of the Consumer Advisory Council is exportable, and was shared with consumers, patients, health care workers, clinicians and researchers from around the world. We are, in essence, Canadian Ambassadors for global change and positive empowerment for all arthritis patients wherever they live.

What was most striking, however, is the perception of arthritis in Europe. There is a greater awareness of how serious this disease is and in most countries it is funded with appropriate research and healthcare dollars. Canada is lagging behind when it comes to arthritis research and healthcare funding and it is imperative that we attain this European standard.