Arthritis Patient Advisory Board

About

 

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.

 

 

Mission and Vision

The Mission: APAB participates in all components and phases of arthritis research and serves as a bridge between researchers, people with arthritis, and the community at large.

The Vision: APAB partners in research to create a future where research-based services, tools and knowledge empower people living with arthritis to triumph over pain and disability.

Core Strategic Areas:

  • Research
  • Knowledge translation
  • Community advocacy
  • Education
  • Communications
  • Government relations

Who We Are

Guided by ARC’s vision, the people who volunteer for the Arthritis Patient Advisory Board (APAB) share a willingness to contribute their time and talent to the fight for “a world without arthritis”. APAB 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 ARC. 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. APAB membership consists of:

  • Two co-chairs, thirteen patient members, an ARC 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

Members

  • Supporting arthritis research within ARC and in Canada
  • Taking an active role in the different research projects brought forth by ARC
  • Participating in educational training to broaden input into arthritis research
  • Training and mentoring fellow APAB members
  • Collaborating with other consumer-centred arthritis organizations on consumer and research initiatives
  • Participating in at least 70% of all APAB monthly meetings

Visit the Become an Arthritis Advocate page for information on how you can get involved.

Co-Chairs

  • Providing leadership and establishing consensus on all APAB decisions including strategic plan
  • Directing recruitment of APAB 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 ARC research activities
  • Ensuring effective representation of Canadians living with arthritis
  • Facilitating ongoing communication with all APAB partners and stakeholders
  • Networking with other arthritis consumer organizations and researchers
  • Initiating and sustaining a strong liaison with ARC administration and researchers
  • Ensuring APAB functions within the annual budget
  • Facilitating the monthly meetings

Accomplishments

  • Promotes the understanding of patient needs and concerns through active collaboration with researchers at Arthritis Research Canada (ARC).
  • Coordinates annual or bi-annual ROAR (Reaching Out with Arthritis Research) events, providing an opportunity for the arthritis community to learn about and discuss the research being conducted at the Arthritis Research Canada (ARC).
  • 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

“You are the BEST.  It is incredible the difference you make for ARC but also for Canada. You have made APAB a national resource”. – Dr. John Esdaile, Scientific Director

“I see APAB 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 APAB 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