Call for Participants: Patient Partner Research Training Program
Many people living with rheumatic diseases are advisors or patient partners in research.
They are involved in different ways like helping to develop research questions important to patients and giving advice through the stages of a project. We are looking to expand the community of patient partners in research and launching a research training program for new patient partners.
Learn more by visiting our website and apply by August 1!
What have we been up to?
Methotrexate tips for kids living with arthritis and their parents – We have developed a Methotrexate resource to help kids with arthritis take methotrexate based on information from a survey that we did with the Irish Children’s Arthritis Network. The resource has been reviewed by rheumatology medical experts at SickKids (in Toronto) – check out the new resource on our website!
“Health data should follow the patient” – CAPA President, Linda Wilhelm, wrote an opinion article about the need for patients to have access to their health information. She speaks about the extra burden of patients to track and coordinate their health information and the negative impact on care – read her article today!
CADTH patient input submission – Earlier this month, we collaborated with Creaky Joints Canada and the Arthritis Society to develop a patient input submission for a new psoriatic arthritis medication guselkumab (Tremfya). We will be working on one for Benlysta for the treatment of Lupus Nephritis – feel free to e-mail us if you wish to share your experiences managing Lupus Nephritis and/or Systemic Lupus Erythematosus.
Pain tip sheet now available in French – We developed a pain tip sheet for people living with rheumatic disease – a common symptom often unaddressed for our community. This new resource is now available in both English and French and available on our website. Thanks to Lene Anderson and our Medical Advisory Committee for providing their feedback and insights!
Patients drive policy change – The Canadian Institutes of Health Research funded the Chronic Pain Network and wrote an article about how patient partners made a significant impact in influencing the management of chronic pain in Canada. Learn how patients are involved in the Network, part of the Canadian Pain Taskforce, and influenced Canada’s pain strategy!
ICYMI: Webinar about vaccines! Don’t worry if you missed it, we have uploaded our webinar about vaccines for people living with autoimmune rheumatic diseases to our YouTube channel. Dr. Janet Pope, a member of CAPA’s Medical Advisory Committee, gave an impressive talk about flu vaccines, routine vaccines, and even a special segment on Monkey Pox – check it out on our website today!
Disability and Reproductive Health during COVID-19 – Researchers at the University of Toronto in partnership with the Disabled Women’s Network are running a study to better understand the reproductive health of women and trans people with disabilities living in Canada during the COVID-19 pandemic. You can participate in a number of ways – by interview or by completing a survey. Learn more by visiting the study website today!
Actemra supply issues – Due to ongoing supply issues, there are delays in patients accessing the self-injection version of Actemra (tocilizumab) at pharmacies. Hoffmann-La Roche has stated that they do not have the capacity to start new patients on the self-injection version of Actemra (tocilizumab) however Intravenous (IV) formulations are available. Please consult the Drug Shortages Canada website for the latest updates – we will continue to share information as it becomes available.
YouTube webinar playlist – Want to see patient leaders in our community in action? Check out our YouTube webinar playlist to see how patients are advocating for better healthcare. Subscribe to our YouTube channel so you can stay up to date on new recordings and watch them on your own schedule.
Lupus Ontario walk on August 20 – Our friends at Lupus Ontario are holding their Walk for Lupus on August 20 to raise money for research, clinics, education and programming. Register as an individual or team and walk for people wih lupus in our community!