Networks of Centres of Excellence of Canada
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Network legacy: Canadian Arthritis Network

Funded 1999-2014

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Getting it right in arthritis research

How working together – and listening to patients – is transforming arthritis research and care

Canada’s arthritis community has borrowed a page from the private sector when it comes to success. Rule #1: Listen to the consumer.

One of the first “consumers” or patients to make her voice heard was Cheryl Koehn, a former Olympic volleyball player who had to begin using a wheelchair at age 27 with debilitating rheumatoid arthritis. She, along with several researchers and other stakeholders, became a vocal proponent in the 1990s for a collaborative model that, for the first time, brought together researchers, healthcare providers, advocates, industry and patients to chart a better course for prevention and treatment of osteoarthritis and rheumatoid arthritis. These maladies affect one in six Canadians and are the country’s leading cause of long-term disability.

The Networks of Centres of Excellence (NCE) agreed, and in 1998 awarded the Canadian Arthritis Network (CAN) an initial four-year, $14.5-million grant. It was the single largest Canadian investment ever made in arthritis research, and it came with an ambitious mandate: to improve the quality of life of people with arthritis, decrease the personal, societal and economic burden of the disease, and promote the growth of the Canadian economy through arthritis research and development in areas of unmet need.

“Before CAN started, the community was fragmented, with different groups having their own priorities,” says Linda Wilhelm, who co-chairs CAN’s Consumer Advisory Committee. “And having patients involved in research simply wasn’t done. If you even suggested it, people would have looked at you as if you had a tree growing out of your head.”

CAN has now completed its term as an NCE, but leaves a legacy of initiatives that will continue to help the more than 4.7 million Canadians of all ages living with arthritis, and millions more at risk of developing the disease as a result of an aging population, rising obesity rates and declining physical activity.

Patients as researchers

Prior to the creation of CAN, and the launch of its Consumer Advisory Council just months later, people living with arthritis had little say in research or health policies. Today, they are at the table deciding how millions of dollars for research and care are invested across Canada. They are equal partners in the truest sense, as board members, advisors, peer reviewers, trainers and even researchers. Every CAN project was required to have a consumer as a co-investigator.

Dr. Claire Bombardier, Co-Scientific Director of CAN, describes the involvement of patients as the network’s greatest success. “This is patient-led research; patients doing research on patients. These are highly qualified consumers who received training in research methods and processes. They are embedded in everything we do.”

Consumer participation has transformed Canada’s approach to arthritis research. Working with CAN, they provided a critical voice that resulted in more research focused on reducing fatigue, and not just pain, in osteoarthritis and inflammatory diseases. CAN also consulted with a broad array of arthritis stakeholders, including consumers, to identify other unmet needs in arthritis research and care, such as bio-reconstructive treatments and techniques for healing joint injuries, preventing onset/progression of early degenerative arthritis, and vulnerable populations such as aboriginal Canadians, children and youth.

A new approach to training

Better outcomes for arthritis patients begin with better training for young researchers. Prior to 1999, most graduate students and post-doctoral fellows worked within their narrow field of expertise, with few opportunities to connect with academics or students in related disciplines, let alone consumers. CAN’s unique training program dismantled those silos, requiring all research to be team-based and multidisciplinary. It led to collaborative research in areas not traditionally associated with arthritis, such as sleep, physiology and biomechanics.

For Dr. Diane Lacaille, who was a trainee when CAN first launched, the network provided new opportunities to look beyond the biology of the disease to understand its economic and social impacts – an area of research that grew considerably during CAN’s term.

“Because arthritis has such a wide spectrum of impact on patients, we really need multidisciplinary teams with a wide breadth of expertise and that can be difficult to find in one centre. CAN created a national community that allowed us to access complementary expertise across the country. These are collaborations that have lasted throughout my career,” says Lacaille, now a rheumatology senior scientist at the University of British Columbia. For example, her research on employment in collaboration with other CAN researchers highlighted the tremendous social and economic impact of arthritis.

CAN provided salary support to over 300  trainees during its 14 years with matching funds from The Arthritis Society, as well as opportunities for over 1,000 trainees to gain expertise working on research grants, summer student programs, training development days and international training rotations. Trainees also received funding to attend the CAN annual conference, where they participated in conference panels alongside basic scientists, clinical or population health researchers, government officials, industry executives and, of course, consumers. It provided valuable networking opportunities at a crucial stage of their career.

“We’re training a new generation of arthritis researchers who understand from day one that their research should be multidisciplinary and that it only makes sense that consumers should be involved early on. How else can the research be relevant?” notes Dr. Monique Gignac, who shares scientific director duties with Bombardier.

“There’s a much greater understanding, both from trainees and researchers, that we can get much further by working together to identify the big picture problems and then working as a community to solve them,” adds Gignac.

The Arthritis Society of Canada has since adopted CAN’s training model and will continue to train researchers using a multidisciplinary, multi-sectoral approach. 

CAN’s legacy

During its 14-year history, CAN funded more than 150 research projects involving more than 1,100 collaborators and partners from across Canada and internationally. They have gained new insights into the fundamental nature of pain, developed new tools to measure pain and new treatments for pain. 

CAN researchers have also identified new causes for bone loss and new genetic and biomarkers to detect osteoarthritis and rheumatoid arthritis. Improved surgical methods for cartilage and joint repair, new ways to repair cartilage and new approaches to joint repair have been created. Researchers have identified risk factors for rheumatoid arthritis as well as possible prevention strategies. New programs have been developed to help children, teens and their families living with arthritis.

Though CAN’s term ended on March 31, 2014, many of its activities will continue. For example, it has built standardized research tools, operating procedures and frameworks that investigators can use to improve research capabilities within Canada and around the world.

Perhaps most importantly, CAN researchers, consumers and industry partners will continue to work together to improve the lives of Canadians living with arthritis through the Arthritis Alliance of Canada, a national coalition of 30 organizations that CAN was instrumental in helping to form in 2002. The Alliance has produced standards for arthritis prevention and care as well as tools for developing and evaluating models of care. It released landmark reports examining the This link will take you to another Web site funding landscape for arthritis research in Canada and the This link will take you to another Web site economic burden of arthritis in Canada. In November 2012, the Alliance released the This link will take you to another Web site National Framework for Arthritis Prevention and Care, which identifies the results, practices and collaborations that will have the greatest impact on those living with arthritis.

“Is life for people living with arthritis getting better? I know it is,” says Wilhelm, who was diagnosed with rheumatoid arthritis in 1983. “Because of CAN’s leadership, patients are getting access to the treatments we need and there’s greater awareness of rheumatoid and other types of arthritis. We’ve changed the culture. There’s no going back.”

Among CAN’s Legacy Initiatives

  • Arthritis Alliance of Canada
  • The Arthritis Society-Canadian Arthritis Network Training Program
  • Highly Qualified Consumers database (a resource for scientists interested in consumer participation)
  • Canadian Rheumatology Research Consortium (national clinical trials research program)
  • Canadian Arthritis Trainee Association
  • Administrative Data in Rheumatic Disease Research and Surveillance (monitors rheumatic disease prevalence, burden and adverse events)
  • Paediatric Rheumatology Optimized Platforms for Experimental Research (PROPER) (shares resources and best practices)
  • This link will take you to another Web site Centre for Skeletal Biology (resource for standard operating procedures, mouse and cell culture models, and reagents)
  • Canadian Rheumatology Administrative Data (CANRAD) Network (shares best practices for using administrative health data, including physician billing, to improve the research and surveillance of rheumatic disease)