Message from the President: Happy 2020!

The beginning of this new decade is a time of reflection on what we’ve accomplished and where we’re going. Our little, virtual patient organization, founded in 2002 has built a reputation for bringing a credible, knowledgeable voice to health policy decision making and for identifying gaps in research priorities that matter to people living with arthritis. Read more in this message from our President…

Meet Dr. Glen Hazlewood: Using patient preferences to make better decisions

At the 2019 Canadian Rheumatology Association (CRA) meeting, we sat down with Canadian rheumatology leaders who are making an impact. Read the final article in the series to learn about Dr. Glen Hazlewood, a rheumatologist and researcher at the University of Calgary. Learn about he’s leading the way in understanding how decisions are made and how to integrate patient preferences into decision-making!

What have we been up to?

“Don’t call my experience a story” – CAPA Vice-President, Dawn Richards, wrote an insightful article for the British Medical Journal (BMJ) about how language can devalue the patient perspective. She writes about the use of the word story can devalue a person’s experience and contributions. Learn more about why language matters by reading the article on the BMJ website!

Appointment to Advisory Panel – We’re proud to announce that CAPA Board Member, Annette McKinnon, has been appointed to the Canadian Organization of Occupational Therapists Advisory Panel in developing the third version of Enabling Occupation (EOIII), one of the organization’s flagship texts. The goal is to have a new guidance document informing the theory and practice of occupational therapy practice in Canada and beyond. Congratulations Annette!

Patient engagement in research: The new imperative – CAPA Vice-President, Laurie Proulx, co-authored this article with Zarah Monfaredi, Program Facilitator for the Patient-Oriented Research (SPOR) at the Ottawa Methods Centre. They discuss how patient engagement in clinical trial research offers a powerful solution to ensuring research aligns with patient priorities. Learn about the power of patient engagement by reading the article on the Clinical Trials Ontario website!

Gender and health conference – CAPA President, Linda Wilhelm, presented at a gender and health conference about autoimmune disease, sex, and gender. She spoke about the impact of inflammatory arthritis on a person’s life and future areas of research including medication differences among men and women. Learn more by reading her presentation on our website.

Clinical trials 101 en français – We shared an infographic developed by Clinical Trials Ontario in our last newsletter and we’re happy to share the French version. It provides an explanation of what clinical trials are, the different phases of drug development and how to determine if a clinical trial is credible.

Get Involved!

National Pain Taskforce – CAPA Vice-President, Laurie Proulx, presented the patient perspective at a regional consultation for the National Pain Taskforce. You can write to your Federal Minister of Health to express your support for this government priority by using a letter template we developed – show your support today!

Focus group on helping patients make better decisions – A Researchers at the University of Calgary are looking for people living with Rheumatoid Aid to participate in a focus group. The goal of the study is to learn how to use a patient decision aid to help people with early rheumatoid arthritis (RA) make treatment choices. A decision aid is a tool that helps people become involved in decision making, provides information about options and outcomes, and clarifies personal values. The study is open to anyone living in Canada. Learn how to participate by reading the invitation on our website!

Annual General Meeting – We will be hosting our annual and special meeting of members on February 12, 2020, at 6:30 pm ET. This meeting is open to individuals interested in attending – visit our website for more information.

Quality of life survey – The Canadian Spondylitis Association wants to hear from you on how spondyloarthritis (SpA) impacts quality of life including social and emotional well-being, employment/education, and more. SpA includes various conditions such as Ankylosing Spondylitis, Peripheral SpA, Psoriatic Arthritis, Axial SpA, Enteropathic Arthritis, Undifferentiated Spondylitis, Reactive Arthritis, and Juvenile Onset Arthritis. Take the survey to contribute your perspective to this important project.

Stay Informed!

Alberta biosimilars initiative – In December, the Government of Alberta announced changes to reimbursing some biologic medications for adult patients on government-sponsored drug plans. Effective July 1, 2020, the Alberta government-sponsored drug plans will no longer reimburse the originator biologics of Enbrel and Remicade. To help you understand the differences between the originator biologic and the biosimilar, we have developed a short video in English and French.

Strength training for people with Rheumatoid Arthritis (RA) – Many of us with RA have probably not considered strength training as part of our exercise regime. Dr. Jasmin Ma is focusing her research program on supporting strength training behaviour change and developing methods for tailored physical activity for people with rheumatoid arthritis (RA). Learn about her research by reading this article on the Arthritis Research Canada website.

Website, Facebook, Twitter & YouTube – Our website, Facebook page, Twitter account and YouTube channel are updated regularly with new information. A number of CAPA resources are available in English, French, and Spanish. Don’t forget to follow us on Facebook, Twitter and YouTube to keep up to date on the latest arthritis and advocacy information!