Background In 2001, the Arthritis Society in Canada created a Canadian Arthritis Patient Bill of Rights with multiple stakeholders1. In the subsequent 15 years, the landscape of arthritis and its care has changed dramatically. A patient-led and driven not for profit organization, the Canadian Arthritis Patient Alliance (CAPA), wished to provide patients and healthcare providers a new tool that reflected this evolution – a Canadian Arthritis Patient Charter (Charter)2. The Charter was created to enable conversation, better partnership, and improved patient outcomes. CAPA believes patients have both rights and responsibilities in the care and management of their disease, and as such, the Charter includes both.
Objectives In 2014, CAPA led the creation of the Charter - a modernization of the Canadian Arthritis Patient Bill of Rights. We present the Charter's development and launch, its publicity, uses and perceived effect on patient care.
Methods CAPA has driven this project with support from multiple arthritis stakeholders within Canada (including the Ontario Rheumatology Association, the Arthritis Society, the Arthritis Alliance of Canada, the Canadian Rheumatology Association, Arthritis Consumer Experts, Patient Partners, the Canadian Spondylitis Association, and individual patients). One Board member acted as project manager and sought input from members of the arthritis community. Methods to achieve this included phone calls, in person meetings, emails, and online surveys.
Results A Charter was created with input from all arthritis stakeholders, including patients, family and friends, health care professionals, not for profit, and industry. Through meetings over a year, the stakeholders outlined a draft Charter. Public feedback solicited through an online survey publicized by stakeholders through their own networks (including newsletters, social media, websites) led to over 730 survey responses. The Charter (postcard and poster versions in Canada's two official languages) permanently resides on CAPA's website and was mailed to all Canadian Rheumatology Association members. CAPA and its partners disseminated news about the Charter for September's Arthritis Month (newsletters, social media, articles online); these efforts continue. The Charter has been shared in blogs3,4 and journals5,6 and on Facebook and social media, and we will present the number of downloads and hits the CAPA website has had. Its limited use in rheumatology offices will be discussed and patients' perceptions on how it has impacted their care will be presented.
Conclusions The Canadian Arthritis Patient Charter was created to support increased patient engagement in their rheumatology care. It was intended to help increase patients dialogue with their healthcare providers, help them understand rights and responsibilities associated with their care, and improve outcomes.
Acknowledgement CAPA thanks all stakeholders who provided inkind and financial support to this project.
Disclosure of Interest D. Richards Grant/research support from: AbbVie, Amgen, Hoffman-LaRoche, Janssen, Novartis, Pfizer, UCB, Consultant for: AbbVie Canada, Eli Lilly Canada, Janssen Canada, Hoffman LaRoche Canada, Pfizer Canada, L. Wilhelm Grant/research support from: AbbVie, Amgen, Hoffman-LaRoche, Janssen, Novartis, Pfizer, UCB, L. Proulx Grant/research support from: AbbVie, Amgen, Hoffman-LaRoche, Janssen, Novartis, Pfizer, UCB, N. Robertson Grant/research support from: AbbVie, Amgen, Hoffman-LaRoche, Janssen, Novartis, Pfizer, UCB