Arthritis Patient Advisory Board
The Arthritis Patient Advisory Board is comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada. 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.
Mission and Vision
Mission Statement: With Arthritis Research Canada, we ensure that patients are partners, participating in and sharing the results of research focused on patient priorities.
Vision Statement: Our vision is a future where arthritis patients partner in all aspects of research, to improve quality of life.
Core Strategic Areas:
- Knowledge translation
- Community advocacy
- Government relations
Who We Are
Guided by Arthritis Research Canada’s vision, the people who volunteer for the Arthritis Patient Advisory Board share a willingness to contribute their time and talent to the fight for “a world without arthritis”. Members believe in the power of scientific research to understand, treat and often cure disease. This passionate belief coupled with the broad skill set and diversity of the group enables them to provide an incredible range of information, education, and support to Arthritis Research Canada. As volunteers, they gain satisfaction from learning new skills, using life experience to help others, and knowing that they are contributing back into the community. Arthritis Patient Advisory Board membership consists of:
- Two co-chairs, thirteen patient members, an Arthritis Research Canada Board Representative, a Research Liaison, and a Communications Liaison.
Visit the Arthritis Patient Advisory Board Team page to learn more about the members.
What We Do
- Supporting arthritis research within Arthritis Research Canada and in Canada
- Taking an active role in the different research projects brought forth by Arthritis Research Canada
- Participating in educational training to broaden input into arthritis research
- Training and mentoring fellow Arthritis Patient Advisory Board members
- Collaborating with other consumer-centred arthritis organizations on consumer and research initiatives
- Participating in at least 70% of all Arthritis Patient Advisory Board monthly meetings
Visit the Become an Arthritis Advocate page for information on how you can get involved.
- Providing leadership and establishing consensus on all Arthritis Patient Advisory Board decisions including strategic plan
- Directing recruitment of Arthritis Patient Advisory Board members
- Creating and monitoring a mentorship system to assist new and current members
- Maintaining a consistent and strong advocacy voice on all matters relating to Arthritis Research Canada research activities
- Ensuring effective representation of Canadians living with arthritis
- Facilitating ongoing communication with all Arthritis Patient Advisory Board partners and stakeholders
- Networking with other arthritis consumer organizations and researchers
- Initiating and sustaining a strong liaison with Arthritis Research Canada administration and researchers
- Ensuring Arthritis Patient Advisory Board functions within the annual budget
- Facilitating the monthly meetings
- Promotes the understanding of patient needs and concerns through active collaboration with researchers at Arthritis Research Canada.
- Previously coordinated the annual ROAR (Reaching Out with Arthritis Research) event, which provided an opportunity for the arthritis community to learn about and discuss research conducted at Arthritis Research Canada. Event recordings from 2011 to 2018 are available here.
- This educational outreach has been re-imagined as the Arthritis Research Education Series, which takes a digital, multi-media format. This new format allows for greater access to important research information, while still offering the benefit of an interactive learning opportunity. To find out more, please click here.
- Engages in the worldwide exchange of knowledge and skills.
- Involved in preparing and editing the Glossary of Terms and Acronyms Used in Health Research: A Consumer’s Guide.
- Created the Arthritis Lifestyle Management Guide, a compilation of techniques that may be used to cope with the everyday challenges faced by people living with arthritis.
- Designed the Lay Research Summary Template for researchers to communicate the key messages from their research to the general public.
- Publishes a quarterly Arthritis Newsletter that aims to keep the public informed of advances in arthritis research and share stories and perspectives on living with arthritis.
- Participates in social media as part of the goal to bridge the gap between researchers, patients and the larger community.
Arthritis Wellness Conversations
The Arthritis Wellness Conversations are a series of discussions that include members of the Arthritis Patient Advisory Board along with an Arthritis Research Canada scientist whose area of study, aligns with the topic of conversation.
Arthritis Research Canada is delighted to have these conversations hosted by Sandra Sova, who is also host and producer of the Chronic Wellness radio show and is active in her community as speaker and educator on self-care.
These group discussions offer a great opportunity for our patients advisors to share their real life experiences as people living with arthritis in partnership with one of our expert arthritis researchers who can offer their scientific perspective.
To learn more about the Arthritis Wellness Conversation topics and listen to the recordings, please click here.
“You are the BEST. It is incredible the difference you make for Arthritis Research Canada but also for Canada. You have made the Arthritis Patient Advisory Board a national resource”. – Dr. John Esdaile, Scientific Director Emeritus
“I see the Arthritis Patient Advisory Board as a group of interested, well-informed “patient advocates” ready and willing to facilitate research in any way they can; a group of volunteers with considerable expertise from other life roles / experiences. The primary benefit of the Arthritis Patient Advisory Board is quick and easy access to a patient point of view, perspectives of people living with arthritis; genuinely interested collaborators, not afraid to be direct, and able to articulate the parts of a project plan or study results that “make sense” or carry impact for people living with arthritis”. – Catherine Backman PhD, OT(C), FCAOT