CAPA presents at important
It’s been a busy month preparing for the annual meeting of the Canadian Rheumatology Association and the Arthritis Health Professions Association! CAPA President, Linda Wilhelm, is at the meeting and is participating in many ways. She made a presentation at the Canadian Arthritis Research Conference on arthritis pain and delivered a poster presentation on how we have advocated and supported people living in pain through the Opioid Crisis. We also released our new resources on managing chronic pain for patients and policymakers – check them out on our website today!
What have we been up to?
Patented Medicine Prices Review Board (PMPRB) submission – Did you know that Canada has laws in place to ensure Canadians do not pay excessively for patented medicines? The PMPRB protects and informs Canadians by ensuring that the prices of patented medicines sold in Canada are not excessive and reporting on trends in prescription medications. The organization is currently reviewing its approach to excessive drug pricing and sought public input on the proposed guidelines. We developed a submission on behalf of people living with arthritis – visit our website to learn more!
CADTH workshop – Our workshop submission on patient engagement in health technology assessment was accepted for the Canadian Agency for Drugs and Technologies in Health (CADTH) Symposium. It will provide an opportunity for patients, patient group representatives, family caregivers, representatives of health charities, and others to learn about health technology assessment and health technology management, the current state of patient input at CADTH, and how patient organizations and health charities perceive this state. Visit the CADTH website to learn about the workshop and how you can get involved!
Share your input on #ChronicPain – The Canadian Pain Task Force has launched an online consultation to better understand and address the needs of millions of Canadians with chronic pain. Anyone with an interest in pain is encouraged to share their input by April 17. Feel free to share on social media with the hashtag #TakingActionOnPain!
Become a Patient Engagement Research Ambassador! The Canadian Institutes of Health Research (CIHR) is Canada’s federal funding agency for health research. CIHR’s Institute of Musculoskeletal Health and Arthritis (IMHA) is looking to fill eight positions with individuals who are interested in being a Patient Engagement Research Ambassador (PERA) for the Institute. As a PERA, you will represent the patient-oriented research mandate of IMHA, and lead and guide efforts to ensure patient-oriented research principles are incorporated in relevant IMHA activities and funding opportunities. Learn more about the opportunity on the CIHR website!
OMERACT shared decision-making survey – OMERACT stands for Outcome Measures in Rheumatology and represents a community of patients, health professionals and researchers who are working together to improve clinical trials by developing core sets of outcome domains. They are looking for patients to review the draft core set and prioritize and endorse the outcome domains on shared decision-making. Visit the CAPA website to learn how to participate!
Side effects research survey – Arthritis medications benefit many of us but they can also have side effects. A research team at the University of Calgary wants to develop a complete list of medication side effects experienced by people living with Rheumatoid Arthritis. Contribute to advancing the understanding of medication side effects by taking the survey today!
Focus group to help patients make better decisions – Researchers at the University of Calgary are looking for people living with Rheumatoid Arthritis to participate in a focus group to test a patient decision aid for people with early rheumatoid arthritis (RA). 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!
Medication decision-making in pregnancy – A team at the University of British Columbia is recruiting for a study to understand medication decisions for family planning and pregnancy among women with Rheumatoid Arthritis (MOTHERS). You may qualify for the study if you are a woman between 18 – 50 years old with a diagnosis of Rheumatoid Arthritis and live anywhere in Canada. They are looking to speak with certain under-represented groups – please read the team’s blog post on Mamas Facing Forward for more information!
Medications and milk community event – Women who are breastfeeding may need to take medications and researchers from the University of Manitoba want to know what questions they may have. Join an open discussion on February 29 in Winnipeg to discuss how this research should be conducted and the best way to collect breast milk samples (spoiler alert: CAPA Board member, Laurie Proulx, will be speaking at the event!). Have your say and register for the event today!
“Benefiting other Moms like me” – The founder of Mamas Facing Forward was interviewed for this article by Mother to Baby, an information service for Moms on medication use in pregnancy and breastfeeding. Learn about a Mom’s experiences participating in a study where she donated some of her breast milk to benefit other Moms just like her!
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, Spanish, and Chinese. Don’t forget to follow us on Facebook, Twitter and YouTube to keep up to date on the latest arthritis and advocacy information!