Patients Play Key Role in Arthritis Research
Physicians and scientists conduct health research in academic settings, but most do not live with the diseases they study. Arthritis Research Canada has involved patients in all aspects of their research over the past 25 years to ensure it results in programs and resources that directly benefit people who live with arthritis and its challenges and symptoms every day.
“The best research happens when everyone has a voice around the table,” said Dr. Catherine Backman, a retired occupational therapist and Senior Scientist at Arthritis Research Canada. “The patient voice is powerful in getting research teams to think about what is most relevant in helping solve the practical, day-to-day issues caused by arthritis.”
Arthritis Research Canada conducts practical research for everyday living, which means finding answers to give people better, timelier, and more cost-effective solutions for living well with their diseases. Patients are involved in every aspect of research through the Arthritis Patient Advisory Board, which was established in 2002. In Quebec, the patient board is called Patients Intéressés par la Recherche sur l’Arthrite.
“People living with arthritis are engaged throughout the entire research process,” Backman said. “They identify research questions, help with research design and patient recruitment, interpret findings and develop key messages, so the outcomes get into the hands of the people who need them the most.”
Arthritis Research Canada was one of the first research organizations to establish a patient advisory board and created a model that many other organizations have emulated.
What is the Arthritis Patient Advisory Board?
Arthritis Research Canada’s patient board includes volunteer advocates living with various types of arthritis who are of different ages, genders, ethnicities, socio-economic backgrounds, and skillsets.
Currently, its members live with osteoarthritis, juvenile idiopathic arthritis, lupus, fibromyalgia, ankylosing spondylitis, rheumatoid arthritis, Sjögren’s syndrome, Raynaud’s phenomenon and non-radiographic axial spondylitis.
The board contributes to developing patient-centered research and bridging the gap between research and patient care. Members actively participate in research by sharing their firsthand experiences with arthritis.
Why Patient Participation is Needed
Arthritis is a debilitating disease that affects millions of people worldwide. While medical professionals and researchers play a vital role in studying and finding treatments for arthritis, patients bring lived experience to the table.
“Patients change the way we think,” said Dr. John Esdaile, who led Arthritis Research Canada for over 20 years as scientific director.
By actively participating and sharing their experiences, patients can ensure that research efforts are relevant and responsive to the needs and concerns of those living with different types of arthritis.
“I see the Arthritis Patient Advisory Board as a group of interested, well-informed ‘patient advocates’ who are ready and willing to facilitate research in any way they can,” Dr. Backman said. “They are a group of volunteers with considerable expertise from other life roles and experiences.”
Backman added that the primary benefit of the Arthritis Patient Advisory Board is quick and easy access to a patient’s point of view – perspectives of people living with arthritis who are genuinely interested collaborators and not afraid to be direct.
Ways to Participate in Arthritis Research
In addition to joining a patient board, arthritis patients can contribute to research through patient registries and surveys. Patient registries collect medical information from individuals with arthritis, which can help researchers identify trends, patterns, and potential areas for further investigation.
Surveys allow patients to share their experiences, symptoms, and treatment outcomes, providing researchers with valuable data that can help inform future studies.
Arthritis patients can also raise awareness and support for research funding. By sharing their stories and experiences, patients can help increase public understanding of arthritis and its impact on daily life. This, in turn, encourages individuals and business to donate and policymakers and funders to allocate more resources for arthritis research.
Why People Choose to Get Involved
People choose to get involved in arthritis research for various reasons – from wanting to help advance treatments to looking for a sense of community and support while living with a chronic disease.
Christine, who has been living with rheumatoid arthritis, osteoarthritis and fibromyalgia for over 30 years, joined the Arthritis Patient Advisory Board for a couple of reasons. “I wanted to be more involved with what research was currently going on in arthritis and to be a part of a group of people with similar medical issues,” she said.
Nadine, who lives with lupus, joined to give back. “I decided that I wanted to give back to the community in the limited way that I can,” she said.
Alison, who has rheumatoid arthritis, has been on the patient advisory board for more than five years because of the people. “The members are committed to sharing what they can, when they can with Arthritis Research Canada’s leadership and scientists who truly value partnering with patients.”
The Benefits Go Both Ways
While patient participation in research undoubtedly benefits researchers, it also helps people living with arthritis by finding answers to the challenges they face every day.
For Christine, getting involved in arthritis research has improved her knowledge and understanding of arthritis research, as well as her ability to communicate her personal experiences with arthritis.
“I have gained a better understanding about the types of arthritis research being undertaken,” she said. “Being part of the different research projects has helped me express my opinion on some of the topics that are being studied.”
Eileen Davidson, also known as Chronic Eileen, lives with rheumatoid arthritis and has one of the top arthritis blogs, according to several health websites. She finds the Arthritis Patient Advisory Board valuable.
“I’ve learned so much about many different forms of arthritis, the management of the disease and treatments and how to understand difficult medical jargon,” she said. “Getting involved in research has not only helped me as a patient advocate, but has also helped other patients who turn to me for information. I know what I know because I am involved with Arthritis Research Canada.”
Patient Engagement Leads to Real Results
In addition to being active members of every research team, patient partners share important findings with the general public. This has taken many formats over the years, but the goal has always remained the same: to get research results into the hands of those who need them most. Here is a list of some of those initiatives:
- Previously organized the annual Reaching Out with Arthritis Research event, whereby scientists presented research findings and patients could ask questions.
- Created the development of the Arthritis Research Education Series, a digital, multimedia initiative that highlights specific research projects, resources and more for people living with arthritis.
- Developed and refined processes and policies to support efficient and effective partnerships and contributions to working with scientists at Arthritis Research Canada.
- Regularly engage in the global exchange of knowledge and skills. Members of the patient board have taken part in arthritis research conferences and many other patient-led initiatives.
- Played a vital role in creating and editing the Glossary of Terms and Acronyms Used in Health Research: A Consumer’s Guide.
- Developed the Arthritis Lifestyle Management Guide, a comprehensive compilation of techniques designed to help individuals cope with the daily challenges of arthritis.
- Designed the lay research summary template for researchers, helping them to effectively communicate the key messages from their research to the general public.
- Contribute to the quarterly Arthritis Newsletter with the aim of keeping the public informed of advancements in arthritis research, as well as sharing personal stories and perspectives on living with arthritis.
- Supported the Arthritis Wellness Conversations to provide education, encouragement and resources for people living with arthritis. These conversations cover various topics with a primary focus on how science and research play a role in supporting the physical, mental and emotional health of people with arthritis.
Actively engage on social media platforms to bridge the gap between researchers, patients, and the wider community.
By participating in research and advocacy efforts, patients can help advance the understanding and treatment of arthritis. In fact, collaborations between patients, medical professionals, and researchers are crucial in finding innovative solutions and improving the lives of those affected by arthritis.
“People living with arthritis are the only ones living with it every day,” said Dr. Backman. “They’re the ones who have the most to gain or lose from the decisions that are being made.”
