Arthritis community leaders launch new patient portal to improve patient care in BC
ArthritisBC+Me Portal helps BC patients learn about arthritis programs and resources
A group of BC’s leading arthritis specialists, researchers and patient groups are pleased to announce the launch of the ArthritisBC+Me portal designed to help BC patients learn about arthritis and local programs best suited to their needs. The first of its kind in Canada, the portal represents the commitment of the community partners – Arthritis Consumer Experts, Arthritis Research Canada, Mary Pack Arthritis Program, The Arthritis Society and the BC Society of Rheumatologists – to making arthritis information and services more accessible to the estimated 1 in 5 British Columbians who are living with arthritis.
“Preventing Rheumatoid Arthritis (Pre-RA): perspectives of people with RA, people at risk and of rheumatologists” study
A research study funded by the Canadian Rheumatology Association’s Initiative for Outcomes in Rheumatology cAre (CIORA) wants to understand the perspectives of people with RA, those at risk of RA and health care providers about potential treatments aimed at preventing rheumatoid arthritis. Arthritis Consumer Experts is a partner organization on the project.
- Aged over 18?
- Someone with rheumatoid arthritis OR you have a first degree relative (parent, sibling, adult child) with rheumatoid arthritis?
- Someone with access to a computer and the internet?
Join the study as a patient with RA: https://surveys.core.ubc.ca/PreRA_RAs/login.html
Join the study as a first-degree relative: https://surveys.core.ubc.ca/PreRA_FDRs/login.html
What is ROAR?
With rapid changes in access to health care information and health technologies, managing your chronic disease is becoming more collaborative and patient-centred. The ROAR public forum features a group of researchers from Arthritis Research Canada who are at the forefront of these changes. They will share what the latest research, developed in collaboration with patients, is telling us about arthritis care and self-management. Updates on current research will be presented in a relaxed and informative series of talks for people with arthritis and those who care for them. Bring your questions, as this is an interactive forum.
When? Saturday, October 21st, 2017 – 9:30am-12:30pm (PDT)
Where? Live online webcast or in-person at the Vancouver Public Library Central Branch, Alice MacKay Room, 350 West Georgia St, V6B 6B1
Cost: Live webcast: Free | In-person: $5.00
Register: Click here for the online registration form or call 604-207-0400 and toll free 1-855-207-0400
Speakers and Topics Continue reading
Patient engagement is encouraged from the moment the patient steps into their doctor’s office and has been demonstrated to improve the patient’s overall health outcome. In recent years, the term “patient engagement” has emerged in health research and knowledge translation. A study published in the Journal of Participatory Medicine reports on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board of Arthritis Research Canada. Using a case study approach, study authors describe the planning and the event itself, report on the challenges encountered, and note reflections and solutions that are pertinent for sustaining patient-research collaborative practices.
Definition of patient engagement
According to the study, patient engagement in research varies from minimal involvement to more participatory collaboration, and is broadly understood to occur when patients meaningfully and actively collaborate at any stage of the research process, from setting the research agenda to designing the research project, collecting data, and disseminating results. The foundation of patient engagement in health research is based on:
- the motto “Nothing About Us Without Us” from Charlton J.’s study “Nothing about Us, Without Us: The Dialectics of Disability Oppression and Empowerment”
- encouraging citizen empowerment through participation and wider societal developments
- activating “patient as partners” to create patient-centred care and promote shared decision making
- meeting current research values and ethical concepts such as mutual respect
The history of the Arthritis Patient Advisory Board (APAB)
The Arthritis Patient Advisory Board (APAB), formerly known as the Consumer Advisory Board (CAB), is comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada (ARC). Their goal is to ensure the patient perspective is represented on research matters related to prevention, treatment and self-management of arthritis. Individually and collectively, they communicate research information and findings to arthritis patients, professional organizations and the general public.
Their mission is “to participate in all components and phases of arthritis research, and serve as a bridge between researchers, people with arthritis, and the community at large.” Since 2006, APAB members have organized annual knowledge translation events called Reaching Out with Arthritis Research in Vancouver, Canada. Each interactive event includes presentations from patients, researchers and health professionals. Topics covered include practical disease management information, best practices in prevention and management of arthritis and case studies from current research.
Planning and Preparation
Image courtesy of yodiyim at FreeDigitalPhotos.net
A study published in the European League Against Rheumatism Annual Congress last month shows that the incidence of knee and hip replacement declined after the introduction of biologics to national rheumatoid arthritis (RA) treatment guidelines.
The study looked at 30,868 patients diagnosed with RA at the rheumatology department between 1996 and 2011 and compared them with 301,527 controls from the general population. The baseline total knee replacement (TKR) incidence rate per 1,000 person-years was 5.87 for RA versus 0.42 for the controlled group. Prior to 2002, the incidence of total knee replacement increased among RA patients, but started to decrease after the introduction of bDMARDs and their associated guidelines in 2003. In February of 2007, the rate of TKR changed to 1.8 TKRs/1,000 person. Over the study period, the incidence of total knee replacement and total hip replacement increased among the general population controlled group. In contrast, there was a downward trend among RA patients.
Lene Dreyer, MD, from the Center for Rheumatology and Spine Diseases in Denmark, is one of the author the study. Dreyer explained: “Our findings show a clear downward trend in these two operations in RA patients in Denmark since the additions of [biologic disease-modifying anti rheumatic drugs] bDMARDs to treatment protocols. Also, the overall pattern of our findings is in line with those recently reported from England and Wales.”
Below is a video examining the quality of rehabilitation care, specifically in hip and knee replacements: Continue reading
Hosted by Arthritis Research Canada, the ARThritis Soirée is an evening designed to attract the city’s business and community leaders, philanthropists, doctors, scientists, healthcare professionals, and those who have an appreciation of art and a desire to support arthritis research.
Research has shown art adds to one’s well-being and therefore is a great element in managing chronic diseases on a holistic level. Moreover, art adds an extra factor of excitement and depth to the Soirée each year with the introduction of a different art form.
This year’s event will take place on Thursday, May 18, 2017 at the Fairmont Hotel Vancouver. The evening’s entertainment will feature world-renowned violinist Jenny Bae.