AB1481-PARE Canadian arthritis patient alliance: who are we? what have we been up to?

Abstract

Background: The Canadian Arthritis Patient Alliance (CAPA) is a grassroots, patient-driven, independent, national advocacy organisation with volunteer members from across the country. CAPA's fundamental belief is that the first expert on arthritis is the individual who lives with the disease and who provides a unique perspective that is all too often absent in health care, health policy and research. Objectives: Here we will present a poster with the intent to give an overview of what CAPA is, the resources that are available to individuals living with arthritis, our involvement in research as well as our collaboration with other health organisations and government. Methods: CAPA continues to promote its Arthritis Patient Charter and provide print outs to organisations that request it. It has conducted various surveys to better understand the needs of its members and develop support materials to help address these needs. CAPA also worked with Health Canada on various initiatives in regards to health policy development, drug review policy and patient engagement initiatives as well as participated as collaborators on research teams. Results: The following key accomplishments and continued projects will be highlighted: 1) Arthritis Patient Charter was developed with other groups in the Canadian arthritis community that outlines the rights and responsibilities that arthritis patients should expect in their care. 2) Collaboration on research teams-for example, as a Member of the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) as well as on CIHR's Institute of Musculoskeletal Health and Arthritis Research (IMHA) Ambassadors. Individual CAPA members also work with researchers to contribute to their projects and have co-authored research publications. 3) A methotrexate resource-A survey on the topic of Methotrexate was developed by CAPA Board members with the advice from a rheumatologist was as circulated through its wide network in English and French via social media, newsletters and an email blast to our membership. Patient resources will be developed based on the survey response. 4) Pregnancy with Arthritis-a web-based resource created with patient input to help those contemplating a step into parenthood. 5) Biosimilar and medical cannabis resources-along with its position papers, CAPA has created a video to help patients understand this type of medication. CAPA has also written a position paper on Medical Cannabis. 6) Other forms of input-CAPA provides the patient perspective via official submissions to Health Canada, and the Canadian Agency for Drugs and Technologies in Health. Conclusions: CAPA will present highlights of its key achievements and continued collaboration within the arthritis community. CAPA continues to engage with various organisations in order to identify gaps within the community with the intent to develop needed resources for patients and caregivers and direct our advocacy efforts.