PARE0009 Canadian arthritis patient alliance: understanding member profiles and needs
Authors: N. Robertson, L. Wilhelm, D.P. Richards, L. Proulx, A. McKinnon, J. Gunderson, C. Reece, A. Sirois
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> Established in 2002, the Canadian Arthritis Patient Alliance (CAPA) is a grass-roots, patient-driven, independent, national organization with members across Canada. CAPA believes the first expert on arthritis is the individual who has the disease. We assist members to become advocates not only for themselves but all people with arthritis. CAPA works with other organizations, representatives from all levels of government, and researchers to ensure the patient voice is both heard and present. We communicate the latest news on health policy developments, research, technology and emerging issues relevant to members through our newsletter, website, Facebook, Twitter and YouTube channels. CAPA welcomes all of those who support CAPA's goals, especially Canadians with arthritis, to become members. <h3>Objectives</h3> CAPA underwent a strategic renewal in 2013, re-establishing its focus and operations. Since that time, CAPA has produced an annual strategic plan, and reported on yearly achievements in relation to the plan. In 2017, CAPA decided to conduct a membership survey. The survey was designed with three objectives in mind: (1) Understand our membership's profile and interests, (2) Understand member awareness and support for CAPA projects and strategic direction, and (3) Seek membership input on CAPA's website. <h3>Methods</h3> A survey was created using Survey Monkey (in both English and French, Canada's official languages) and sent to members. Results of the survey were sent to the members and made available on CAPA's website (http://www.arthritispatient.ca/files/5315/1128/7211/CAPA_Suvery_-_Spring_2017.pdf). As an additional incentive, two C$50 VISA gift cards were drawn from among Canadian respondents. The survey was open from May 1 to 21, 2017. <h3>Results</h3> The response rate to the survey was 23% (that is, 85 respondents out of a possible 369). Of those who responded, the majority were women, with over 75% aged 55 years of age or over. Respondents came from all across Canada. Members generally came to CAPA to find information and stay abreast of events in the arthritis community; only a small portion, 17%, joined to become more involved. Members supported CAPA's strategic direction, which aligned with their stated interests. Members also provided feedback on the website. For the most part, members appreciated the information, providing some recommendations moving forward, including supporting a mobile friendly website (i.e., responsive design). <h3>Conclusions</h3> CAPA is using the information from this membership survey as confirmation of its strategic direction moving forward; continued focus will be on providing information, connecting with key stakeholders in the arthritis community (Canadian and abroad), and undertaking focused projects as they arise. Member feedback has been critical in guiding the website redevelopment, which is currently underway. We expect it to be complete in early summer 2018. <h3>Acknowledgements</h3> CAPA would like to thank the organizations that collaborate with us as well as various pharmaceutical companies whose funding enables our operation. <h3>Disclosure of Interest</h3> None declared