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Arthritis Broadcast Network’s channel provides information about the different types of arthritis, pain management, self-care, exercise, nutrition, models of care, patient engagement, research, and many other topics valuable to the arthritis community. Please show your support and help others living with arthritis by doing the following:
Arthritis Broadcast Network had the pleasure of interviewing Dr. Cheryl Barnabe at a #CRArthritis event, a champion of arthritis care and research in Indigenous communities. In this interview, Dr. Cheryl Barnabe, Assistant Professor at the Division of Rheumatology at the University of Calgary, shares with us information from her workshop “Investigating access to arthritis health services for Aboriginal people: A Framework for System Reform”.
Rheumatoid arthritis affects about 1% of the Canadian population or 1 out of every 100 people. This increases to 5% for aboriginal Canadians. This population not only is at greater risk for getting RA but the disease is more severe than with other populations. For aboriginal people rheumatoid arthritis is one of the five top five chronic diseases reported. More Canadian women get RA then men (3:1), however, this figure almost doubles for aboriginal women.
A study conducted by the National Aboriginal Health Organization (NAHO) 2002, by First Nations people for First Nations people, had approximately 22,000 participants making up 238 communities, both on-reserve and off-reserve First Nations people across Canada.
The following highlights some of the results of the study:
arthritis is one of the five top conditions to affect the First Nations population
more than half (52%) of First Nations adults with disabilities reported having arthritis compared to 14.6% without disabilities
25.3% of First Nations adults have arthritis compared to 19.1% of the general Canadian population
there is a higher rate of arthritis among First Nations women compared to other women in Canada, except for women over 60 years of age. The following chart shows the range of difference between these two groups with more than double the First Nations women with arthritis compared to other Canadian women up to age 39 years.
Dr. Barnabe is also a past recipient of the Canadian Institutes of Health Research’s (CIHR) Foundation Grant. Below is the description of the award on the CIHR website:
Developing a more complete picture of arthritis in Indigenous communities
“Most people aren’t aware that women and Indigenous people are at a much higher risk for arthritis, and that kids can get arthritis too.” — Dr. Cheryl Barnabe
CIHR Foundation Grant Recipient
Dr. Cheryl Barnabe
Cumming School of Medicine
University of Calgary
Dr. Barnabe’s Research
Dr. Cheryl Barnabe, a Métis clinician and researcher at the University of Calgary, is exploring why arthritis appears to disproportionately affect Indigenous communities, and what can be done to reduce these disparities. Continue reading →
The benefits of exercise in inflammatory arthritis and osteoarthritis
ACE has frequently written about the benefits of exercise in inflammatory arthritis (IA) and osteoarthritis (OA). During a series of EULAR presentations, speakers provided evidence for regular physical activity for IA and OA patients.
Anne- Kathryn Rausch, an academic from Zurich University, spoke about how general recommendations for physical activity are effective, safe and feasible for patients with ankylosing spondylitis, rheumatoid arthritis, and osteoarthritis. Continue reading →
“New drugs – new perspectives: clinical and regulatory issues concerning biosimilars” – Professor Tore Kvien
During the session, “New drugs – new perspectives: clinical and regulatory issues concerning biosimilars,” Professor Tore Kvien, head of the department of rheumatology at the Diakonhjemmet Hospital in Oslo, updated EULAR delegates on the latest issues and evidence on the use of biosimilars.
ACE is the leader in Canada providing patient information and education on biosimilars. If this therapy is new to you, please visit the Biosim•Exchange area of our website. Continue reading →
Patient engagement in research or patient-oriented research refers to patients, their family members and other informal caregivers partaking in research as more than study participants but as members of the research team. For example, involving patients in some or all parts of the research process from deciding what topic is studied, to how the research is conducted to how the findings are presented and used.
Partnering with patients ensures that health research is both relevant and meaningful to the patient community. For example, in rheumatology, patients’ perspectives have been instrumental in broadening the scope of the research agenda to include more patient-relevant factors such as well-being, fatigue and sleep patterns. These are significant aspects of life with inflammatory forms of arthritis, yet until recently the topics were largely ignored or underrepresented in research and outcome measurement. This example depicts why patient engagement is so critical. If researchers do not work with patients how can they know what they are studying is relevant to the population that will be most affected by it? It is in this context that the saying “nothing about me, without me” applies so strongly. Other benefits of patient engagement include enhanced quality of research with more perspectives considered, meaningful role(s) for patients and greater involvement in their communities, co-learning between patient and researchers as well as getting important research findings to a broader audience. Overall, patient engagement is a promising way to improve healthcare services and patient experience.
Figure that summarizes the components of meaningful patient engagement in research from a patient perspective. Developed by the PIERS Project Team
ACE is sharing the latest research news from this year’s European League Against Arthritis’ (EULAR) Annual European Congress of Rheumatology in Amsterdam, Netherlands.
ACE is attending this year’s annual meeting of the European League Against Arthritis (EULAR) in Amsterdam, which will be host to 14,000 participants from more than 120 countries in Europe and around the world. This year, EULAR received more than 5,050 research abstracts – the most ever. The meeting will feature over 175 sessions and 45 themed poster tours with more than 560 speakers showcasing work from 2,256 poster displays. ACE is here to learn the most current information on the impact, burden and cost of arthritis for patients and society, and the improved ability to diagnose and treat different types of arthritis early.
Many of these advances are the product of collaboration between healthcare providers and patients and patient organizations like ACE. We will be reporting over the next few days on how this collaboration is advancing models of care and development of advanced therapies.
ACE is also leading a meeting with members of the Global RA Network who are attending EULAR. At the meeting, ACE will facilitate discussion on the development of tools for Global RA Network members to use in their countries to raise awareness and advocate for improved models of care. Based on the 2017 Global RA survey findings, ACE is proposing to develop tools that will improve RA patients’ understanding about the kind and quality of care they should be receiving in their country to improve their disease and overall health.
Do you have psoriatic arthritis or care for someone who does? We need your valuable input.
The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input on the manufacturer’s submission for tofacitinib (Xeljanz®) for the treatment of psoriatic arthritis (PsA) when the response to previous disease-modifying anti-rheumatic drug (DMARD) therapy has been inadequate.
The CDR is part of the Canadian Agency for Drugs and Technologies in Health (CADTH). The CDR conducts objective, rigorous reviews of the clinical and cost effectiveness of drugs, and provides formulary listing recommendations to the publicly funded drug plans in Canada (except Quebec).
To help them make their recommendations, the CDR accepts input from patient groups, like Arthritis Consumer Experts (ACE). We would like to gather your views and share them with the CDR.
Arthritis Consumer Experts (ACE) is excited to host its inaugural ABN #Greek2Street Facebook and Twitter Live event at this year’s KT Canada Scientific Meeting being held in Vancouver, BC.
Knowledge Translation (KT) is the umbrella term for all of the activities involved in moving research from the laboratory, research journal, and the academic conference into the minds of organizations and people who can put it to practical use in the clinical office to improve health outcomes.
Cheryl Koehn explains: “#Greek2Street is the magic behind good Knowledge Translation: getting language and ideas that sound like “Greek” out to the “street” so people can put scientific knowledge into action in our everyday lives.”
Using the latest social media technology, consumer-patient “reporters” will help us de-mystify the world of KT through live interviews with conference presenters and attendees that will be broadcast to the public through Facebook and Twitter. Arthritis Consumer Experts has successfully run a similar event called #CRArthritis at the Canadian Rheumatology Association and Arthritis Health Professions Annual Meetings.
Join the KT conversation online at the Arthritis Broadcast Network (ABN) Facebook page or Twitter (@ArthritisNetwrk) feed using #Greek2Street. Interviews will take place from Thursday, June 7th until Friday, June 8th. Like, share and retweet the live interviews, send us your comments or questions through Facebook and Twitter during the interviews. A reminder that the interviews remain on the ABN Facebook Page and will be made available on the ABN YouTube channel under “KT Canada: ABN #Greek2Street Facebook and Twitter Live 2018“.
The general election in Ontario is scheduled for June 7, 2018. What have party leaders and candidates said about arthritis care in Ontario?
Arthritis is a chronic disease that has a devastating and debilitating effect on the lives of more than 6 million Canadians and more than two million Ontario residents. Provincial policy directly impacts the lives of those living with arthritis and their families. The next Ontario provincial government must acknowledge the gaps in arthritis care and offer some solutions to the pressing issues facing people living with arthritis. To learn more about arthritis in Ontario visit our ON Election 2018 page.
On June 7th make your voice count. Arthritis needs to be heard and this can only be achieved through individuals exercising their right to vote to make positive changes in provincial arthritis care.
Arthritis Consumer Experts (ACE) sent a questionnaire to the party leaders and candidates of the 2018 Ontario Provincial Election, asking for their comments and promises on the following subjects:
models of care
Aboriginal arthritis care
reimbursement for inflammatory arthritis medications
flexible work arrangements
Over the past month, ACE collected Party and individual candidate’s responses. Responses have been posted on the ON Election 2018 section of ACE’s website, and we will continue to post responses as we receive them, up until the day of the election.
See what party leaders and candidates have said about issues related to arthritis in Ontario in order to make an informed vote for improving arthritis prevention, treatment, and care in Ontario.
If you have comments, questions, or concerns about any of the answers provided by candidates or party leaders, please take the time to contact the parties directly. Please click here to view the contact information for the registered political parties in Ontario.
Did their responses help you decide how you will vote? Tell us what you think of their answers. Please contact us by email.
JointHealth™ Education: Advanced Therapies for Inflammatory Arthritis
Arthritis Consumer Experts (ACE) is excited to announce the launch of its newest on-line patient education course: JointHealth™ Education Advanced Therapies for Inflammatory Arthritis. This three-lesson course is designed to help patients living with inflammatory arthritis identify when is the appropriate time to transition from conventional synthetic disease modifying medications (csDMARDs) to an advanced therapy, such as a targeted synthetic DMARD or biologic DMARD, and what key questions to ask about how they are taken and how they work in the body.
“JointHealth™ Education was inspired by many of ACE’s members living with an inflammatory arthritis who have told us they lack the knowledge and communications skills to have full, satisfying conversations with their rheumatologists on topics such as treatment options during their appointments. We want to ensure patients have the tools to understand when they need to start thinking about a therapy change. Patients like me often wait too long to make treatment plan adjustments, such as moving to an advanced therapy,” said Cheryl Koehn, Founder and President of Arthritis Consumer Experts.
“Canadian rheumatologists have been actively discussing and pursuing ways to improve communication between patients and rheumatologists in order to work together to set treatment goals and establish a treatment plan to achieve the best possible disease outcomes. JointHealth™ Education Advanced Therapies is a great course not just for patients, but also for rheumatologists – junior and senior, alike. We need to see our patient’s experiences, needs and goals through their eyes and words,” said Kam Shojania, MD, FRCPC, Clinical Professor and Head, Division of Rheumatology, University of British Columbia, and Medical Director of the Mary Pack Arthritis Program.
The JointHealth™ Education program provides current, evidence-informed lessons, quizzes and coaching videos through a secure, on-line classroom where “students” can learn from the comfort of their own home or over the work day lunch hour. The program helps prepare patients to appropriately frame their health concerns and questions with their health care provider. Upon successful completion of a course the patient “Graduate” receives a certificate indicating they have the knowledge and communication tips needed to successfully prepare for their medical visit, talk to their healthcare provider about setting treatment goals and making an overall plan, discuss specific treatments to manage and monitor their type of arthritis.