The effort to create this Arthritis Patient Charter, once again has been a truly grassroots one, with all groups in the arthritis community working together under CAPA’s leadership. The landscape of arthritis and healthcare continue to change and evolve, and to reflect those changes we wish to provide patients and the community with a tool that states the rights and responsibilities of arthritis patients today. We also hope that this updated Charter and the original Arthritis Bill of Rights demonstrates just how far the arthritis community has come. We will continue to work together towards enabling people with arthritis to reach their full potential.

Arthritis Patient Charter

People with arthritis have the right to:

• Be treated with dignity, respect and consideration. This includes being heard by healthcare providers who respect privacy and confidentiality.
• A timely and accurate diagnosis. Arthritis leads to significant joint damage when left undiagnosed and untreated.
• Timely access to all types of high-quality care. This includes access to all qualified healthcare providers and professionals.
• Readily available current information, education and support programs about arthritis and evidence-based arthritis care. People living with arthritis have the responsibility to learn about arthritis and arthritis care.
• Be informed and participate with their healthcare providers in all treatment decisions. This includes discussing treatment risks and benefits and timely access to medical records. People with arthritis have a responsibility to live a healthy lifestyle, speak openly with their healthcare providers, ask questions about treatment and follow the agreed upon course of treatment.
• Equal public reimbursement and timely access in all provinces and territories to available medication and non-medication treatments. Surgery and rehabilitation therapy that improve activities of daily living and quality of life should not be considered elective.
• Live their lives fully without discrimination. Enjoying life to its fullest potential includes taking part in family, social activities, school and employment. This may require removal of barriers and access to disability programs.
• See that research is underway to find a cure and improve quality of life. Arthritis research must: be funded to an amount equal to other chronic illnesses and include people with arthritis to help set priorities, participate as research partners or in clinical trials and benefit from its discoveries.
• Be included in the development of health policies and programs that affect them. The voices of people living with arthritis must be considered to develop the most relevant and meaningful policies and programs.

The following files are available for you to use and download (just click on the title here): Charter postcard (shortened version) and Charter poster version (long version, regular paper)

History

In early 2014, the Canadian Arthritis Patient Alliance (CAPA) entered conversations with the Ontario Rheumatology Association’s (ORA) Models of Care Committee about potentially updating the 2001 Canadian Arthritis Bill of Rights. There was consensus between these two groups that in the 13 years that had passed since this Bill was written, there have been significant positive changes in the arthritis community. As such, the original Bill which was really an advocacy document, and while still relevant in that capacity, required an update. This update would include: revising the rights and responsibilities to better reflect the current landscape of arthritis in Canada, in a format that is easily accessible to all stakeholders (for e.g. available as post-cards in healthcare providers’ offices), and better reflects the condensed nature in which our world now operates.

With this initial support from the ORA, CAPA reached out to various patient groups (including Arthritis Consumer Experts, the Canadian Spondylitis Association, Patient Partners) and individual patients, and gained input and support from the Arthritis Society, Canadian Rheumatology Association, and the Arthritis Alliance of Canada, to create a new draft of the Bill of Rights and Responsibilities, now renamed the Arthritis Patient Charter. Furthermore, these groups sought input from their own stakeholder groups through a published survey seeking input on the Charter’s contents. Over 730 stakeholders from across Canada responded, and their comments are incorporated in this new Charter. In just 8 short months, CAPA mobilized the Canadian arthritis community and created the new Charter.

Original Arthritis Bill of Rights

To view the original Arthritis Bill of Rights, please see here.

A short document has also been put together on the History of the original Arthritis Bill of Rights, which you can read here.

Presentation at the 2015 Canadian Rheumatology Association Meeting

CAPA’s President, Linda Wilhelm, presented this poster on the Arthritis Patient Charter’s development at the 2015 Canadian Rheumatology Association Meeting. Linda was also interviewed at the poster – watch the video here.

Arthritis Patient Charter profiled on CMAJ.ca

The Arthritis Patient Charter, developed by CAPA, was profiled in an article written by the CMAJ.