Dawn Richards: A Canadian arthritis patient charter

Dawn-Richards_newIn 2014 the Canadian Arthritis Patient Alliance (CAPA) undertook the creation of an Arthritis Patient Charter. The arthritis community in Canada has a history of collaboration, to which this project was no exception. In 2001 the creation of an Arthritis Patient Bill of Rights (English and French versions) was led by the Arthritis Society with input from all stakeholders and which was more advocacy-based document (it came out at the time when patients were lobbying for access to biologic treatments). In the nearly decade and a half since that bill was produced, we felt that it was time to provide new life to this document.

We chose to update the original bill because of the changing landscape of the Canadian healthcare system (e.g. many rheumatologists are retiring without younger rheumatologists to take up their patient loads; the population is ageing and their burden on the system is increasing, etc), and as our large and diverse country has become smaller and patients much more connected, thanks to the internet’s resources and social media.  We also felt it important to create a document to further emphasize the partnership between patients and their healthcare providers, and that even though in many cases we can do little to prevent the development of our arthritis, when we have our own disease management responsibilities, we can also be provided with a significant feeling of control over an otherwise powerless situation.

All stakeholders have agreed that the charter will be CAPA branded and reside on our website. Stakeholders have been provided with key messages and a template for their websites (English and French) to consider using, all while pointing towards CAPA’s website. Additionally, we printed and mailed the charter (postcards with a condensed version with English on one side, French on the other, and posters) to all rheumatology clinics across the country. The second large promotional effort will be through delivery and display of the charter in allied healthcare professionals’ clinics and potentially in pharmacies. CAPA will also undertake grassroots promotional efforts (Facebook), personal social media accounts, and outreach to well known Canadian arthritis bloggers). This project will have ongoing publicity efforts to ensure that arthritis patients are aware of the charter and their rights and responsibilities.

We found that there were some important items we learned and can share with respect to how our charter came to be:
•    The importance of stakeholder buy-in and contribution cannot be underestimated. Though CAPA led the development of the charter and houses it permanently on its website, if the whole arthritis community was not part of this process, it would not be successful.
•    Significant time is required. CAPA is a patient driven, volunteer based organization, from which one board member acted as the project lead/manager for eight months, liaising with stakeholders, ensuring resources were secured and tasks were completed, and driving the project towards an end point.
•    This task does not require an excess of resources. The charter was put together with minimal financial resources and significant in-kind resources from a number of partners, which was greatly owing to stakeholder engagement and commitment.
•    The pharmaceutical industry is a stakeholder. It’s important for CAPA to be transparent about pharma as a stakeholder. Like any other stakeholder, pharma members of our community received invitations to provide input to our survey on the charter. Their responses contributed to just under 2% of all responses obtained.

While other disease areas also have patient charters/bills of rights and responsibilities, and there may be some overlap in content, the components of those charters are not identical to those for arthritis, nor would one expect them to be. It is important for us to continue to educate people with arthritis that they are partners in their healthcare and they must continue to be there own advocates in their chronic disease journey.

Partners who provided either in-kind or financial resources include the Arthritis Society, the Ontario Rheumatology Association, the Canadian Rheumatology Association, the Arthritis Alliance of Canada, Arthritis Consumer Experts, Patient Partners, the Canadian Spondylitis Association, and a few individual patients.

Dawn Richards lives with rheumatoid arthritis, and volunteers as the vice president of the Canadian Arthritis Patient Alliance.

Competing interest statement is here.