Resources for Patients by Patients – the Canadian Arthritis Patient Alliance’s Approach

By: Dr. Dawn Richards, IMHA Institute Advisory Board Member, Vice President of the Canadian Arthritis Patient Alliance

Those of us who live with chronic diseases know that our health care providers go to great lengths to help us live our lives well. But by virtue of those providers not living with the diseases they treat, patients often know things care givers do not. We often see gaps in information that would be useful for others like us. At the Canadian Arthritis Patient Alliance (CAPA), we have taken that ‘patient knowledge’ and harnessed it to create resources for patients by patients.

The arthritis community in Canada has a long history of patient engagement in research, thanks to many pioneers in the community from which CAPA has benefited and been lucky to be part of. However, CAPA has gone one step further by proactively identifying specific topics that are important to people who live with arthritis – largely through ‘crowdsourcing’ information. We have produced resources for the community to help people live with and better manage their arthritis. Once resources are created, CAPA turns to scientific and health care professionals to review content for accuracy. Resources are then disseminated in person at conferences as well as through virtual channels (via email, the web, newsletters, and social media).

CAPA has developed a number of resources using this approach, including:

Tips and Tricks When Taking Methotrexate. Methotrexate is one of the go-to medications for arthritis, yet many people have issues when using it. We turned to people who take it to ask how they make adjustments if necessary.

Pregnancy and Parenting with Arthritis: A Resource for Patients by Patients. Planning for and having a family is tough enough without a chronic disease. This resource was developed by people with arthritis who have gone through a pregnancy. Information has been reviewed by leading health care professionals /researchers in the field of reproductive issues, parenting and rheumatic disease.

Arthritis in the Workplace: Resources for Patients by Patients. Work is often a part of your identity, so how can you try to maintain a healthy work environment for yourself while still taking care of your arthritis? These resources provide helpful information.

Chronic Pain Resources are in the process of being developed. We surveyed people who live with chronic pain and who use opioids. Results were presented at the Health Canada Opioid Symposium (September 2018) and the Canadian Agency for Drugs and Technologies (CADTH) Symposium (April 2019). CAPA’s President, Linda Wilhelm, will continue to provide opinions and perspectives through her appointment to Canadian Pain Task Force.

Feel free to share these resources and information within your own networks – these aren’t just for patients – they’re also for health care providers to share with each other and anyone with arthritis!

Date modified:

2019-05-27