“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.
Are you:
Aged over 18?
Someone with rheumatoid arthritis OR you have a first degree relative (parent, sibling, adult child) with rheumatoid arthritis?
AND,
Someone with access to a computer and the internet?
It’s summertime: What’s hot in arthritis research?
In this summer issue of JointHealth™ insight, we report on new information presented at the European League Against Rheumatism (EULAR) Annual Congress, which took place in Madrid, Spain, in June 2017. EULAR updates covered include:
EULAR’s “Don’t Delay, Connect Today” campaign to improve models of care for inflammatory arthritis
Immunogenicity studies that show comparable results between biosimilars and originator biologics
Research from Denmark finds no higher patient use of health services after policy transition to biosimilars
A best practice spotlight on helping patients understand biosimilars
In this issue, you will also find:
Information about a new Osteoarthritis (OA) Tool for family physicians
A profile of a young scientist’s research journey looking at osteoarthritis and biomarkers
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
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 Medicinereports 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.
Image courtesy of digital art at FreeDigitalPhotos.net
According to findings from a recent study, poor patient-provider communication and care coordination result in increased damage in patients with systemic lupus erythematosus (SLE). If you would like to learn more about how to best communicate with your rheumatologist and physician, please visit JointHealth™ Education and take Lesson 1: The Art of communicating with your rheumatologist.
The research, titled “Relationship Between Process of Care and a Subsequent Increase in Damage in Systemic Lupus Erythematosus” was published in Arthritis Care & Research. The team wanted to understand how data from the Lupus Outcome Study could be used to evaluate healthcare interactions and subsequent accumulation of damage by the disease over two years.
The BC Health Research Connection Project invites you to a community dialogue on health research. Registration is free.
You’re invited to a community dialogue on health research to discuss the development of a new provincial program that will help connect people like you to research opportunities. Below are the details for the event:
Date: Tuesday, June 27, 2017 Time: 5:45pm-8:00pm Location:
Marpole-Oakridge Community Centre (Auditorium)
990 West 59th Avenue,
Vancouver Registration: Free, click here. Please register by June 23.
*Refreshments will be served.
Whether you are healthy, sick, young or old, you can help by volunteering to participate in research in a variety of ways.
Come and share your ideas and tell us:
Why is health research important to you?
How can we keep you informed of research opportunities?
For additional information, contact:
Stefanie Cheah, Project Manager at Stefanie.cheah@vch.ca or 604-875-4111 (Ext. 22781)
The event is hosted by the BC Health Research Connection Project, which is led by Vancouver Coastal Health Research Institute in collaboration with health authorities, research institutes and universities across BC. Cheryl Koehn, Founder and President of Arthritis Consumer Experts, is a member of the research team.
In this summer issue of 
What is ROAR?
The BC Health Research Connection Project invites you to a community dialogue on health research. Registration is free.