At the 2017 American College of Rheumatology’s (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Meeting, ACE presented a poster on a global survey – “Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey” – conducted by the Global RA Network – made up of ACE and 20 other patient advocacy groups – designed to gather insights on RA models of care from the patient perspective, as well as probing their knowledge about the disease and available treatments.
The survey revealed the urgent need to improve RA models of care at every stage of the disease awareness, treatment and care journey. One of the key findings was the need for more information and education on rheumatoid arthritis for patients and the public is needed to support people with the disease. Specifically, to help them best describe their symptoms and help them take shared decisions with their rheumatologists.
At the ACR annual meeting, a panel on bridging global gaps in arthritis care looked specifically at ways to improve care for patients living in underserved areas.
Nunavut Election 2017: On election day, vote for improved arthritis care.
The next general election in Nunavut is scheduled for October 30, 2017. How can we improve arthritis care?
Arthritis affects approximately 12,000 adults aged 15 or older in the Territories (Northwest Territory, Nunavut and Yukon). On behalf of Nunavut voters living with arthritis, Arthritis Consumer Experts (ACE) sent a questionnaire to the candidates of the 2017 Nunavut Election.
Please note that unlike most federal or provincial elections in Canada, elections to the Legislative Assembly of Nunavut are conducted on a non-partisan consensus government model, in which all candidates run as independents rather than being nominated by political parties.
Call for patient input on tocilizumab (Actemra®) for giant cell arteritis
Do you have giant cell arteritis? We need your valuable input.
The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for tocilizumab (Actemra®) for the treatment of giant cell arteritis.
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 organizations and groups, like Arthritis Consumer Experts (ACE). Because patient input is vitally important to government decision-making about medications, we would like to gather your views and share them with the CDR.
ACE launches first of three new blogs to help you “power up” your arthritis knowledge, get more connected to the community, and learn the latest about health policy and politics affecting our group of chronic diseases.
As Canada’s largest national patient-led organization and provider of evidence-based information and education programming, ACE is always looking for better ways to “power up” Canadians living with arthritis.
As always, we want to know what you think. We encourage you to share feedback and offer topics of interest for future blog posts.
We hope you had a great Arthritis Awareness Month in Canada!
Is your mouth a gateway to getting arthritis?
When Health Canada’s Canadian Institutes of Health Research was created in 1994, I, like many, was puzzled that they included oral health along with musculoskeletal health in the research pillar known as the Institute for Musculoskeletal Health and Arthritis (IMHA). After all, what do researchers trying to solve the thousands of mysteries that make up “arthritis”, a group of over 100 different diseases, have to do with teeth. But were they ever smart to do so; the latest research shows the mouth and the joints are definitely connected.
Help raise awareness during Arthritis Awareness Month!
You can help increase awareness and understanding of arthritis by sending this pre-drafted letter to the editor of your local newspaper.
September is Arthritis Awareness Month! Help increase awareness and understanding of arthritis by sending a letter to the editor of your local newspaper. We encourage you to edit this template letter to reflect your own experiences. Remember: Letters under 200 words have a better chance of being published. If you are submitting a letter to your editor via email, remember to include your name, home address and telephone number.
Getting “Patient Satisfaction” from Arthritis Health Care
To celebrate Arthritis Awareness Month in Canada, in this issue of JointHealth™ insight, we highlight three international surveys that have helped identify gaps in arthritis models of care from the patient perspective. We want to know what you think. Please complete the three mini surveys in this month’s JointHealth™ insight. Your responses will help drive our 2018 information and education programs to support patients and improve the way health care is delivered by the rheumatologists, allied health professionals, health policy decision makers and others who provide care to Canadians with all types of arthritis.
In this issue, you will also:
Read about the model of care for rheumatoid arthritis
Find a Letter to the Editor template to increase awareness about arthritis in your community
Arthritis Consumer Experts (ACE) is celebrating Arthritis Awareness Month with the #ArthritisMadLibs Twitter Project. The goal is to help others understand the impact of arthritis and make informed decisions about the development of new arthritis programs that will benefit patients and their caregivers.
#ArthritisMadLibs is a chance to re-write the arthritis patient story during Arthritis Awareness Month – one word at a time. On the Labour Day long weekend, the #ArthritisMadLibs hashtag garnered 329.892K impressions, 135 Tweets, 24 participants – averaging 2 Tweets per hour and 6 Tweets per participant.
Since September 1, #ArthritisMadLibs had 910.103K impressions, 379 Tweets, 46 participants – averaging 1 Tweet per hour and 8 Tweets per participant. We thank the patients, health care professionals, patient groups, and researchers who have engaged with us thus far. Our engagement rate on @ACEJointHealth’s Twitter account is at an impressive rate of 2.8% engagement rate (34 link clicks, 179 retweets, 235 likes, 138 replies) – a significantly high engagement rate compared to the average Twitter engagement rate of .7% for the top 25 brands on Twitter. Social media is a tricky business and who you follow, who you have following you, and how many followers you have can affect these statistics but for a grassroot patient organization, we are pretty proud of the #ArthritisMadLibs and its participants and supporters!
Here is a summary of the #ArthritisMadLibs (thus far) and some of our favourite Twitter moments:
#ArthritisMadLibs is a chance to re-write the arthritis patient story during Arthritis Awareness Month – one word at a time.
Arthritis Consumer Experts (ACE) is celebrating Arthritis Awareness Month with the #ArthritisMadLibs Twitter Campaign. The goal is to help others understand the impact of arthritis and make informed decisions about the development of new arthritis programs that will benefit patients and their caregivers.
Mad Libs is a word game where key words in a sentence are left intentionally blank for others to substitute with their own words. As we continue to learn from the global arthritis patient surveys, communications is critical between patients and their doctors, rheumatologists, nurses, pharmacists, friends, colleagues and researchers. #ArthritisMadLibs is a chance to re-write the arthritis patient story – one word at a time.
During Arthritis Awareness Month, ACE will be tweeting daily with 5 themed Mad Libs. The themes are patients, work, family and friends, healthcare professionals, and animals. To participate, please follow hashtag #ArthritisMadLibs on our Twitter account @ACEJointHealth. If you do not have a Twitter account but would like to participate, you can follow our Twitter feed on the Arthritis Consumer Experts website (www.jointhealth.org) and email your answers to firstname.lastname@example.org. To drive the campaign, please like, retweet, and reply on Twitter. Arthritis Broadcast Network will be providing a weekly summary of the Mad Libs.
The Qualman-Davies Arthritis Consumer Community Leadership Award
Do you know a person with arthritis who has, or is, providing leadership in the community and deserves recognition for their valuable volunteer work? We encourage you to help us celebrate their contributions by nominating them for the Qualman-Davies Arthritis Consumer Community Leadership Award.
The Qualman-Davies Arthritis Consumer Community Leadership Award was created in 2014 to recognize one person’s contributions to helping Canadians living with the disease to be heard in decision-making processes that affect millions. That’s what Ann Qualman and Jim Davies did as early pioneers in arthritis advocacy in Canada. Their tireless and selfless efforts helped millions of Canadians.
To submit a nomination, please follow the four steps listed below.
Obtain the prospective nominee’s consent to be nominated prior to submitting this form.
The application deadline is August 31, 2017. The winner and their nominator will be notified by the adjudication committee chair by September 8, 2017. The award will be bestowed in person at the Arthritis Alliance of Canada’s 2017 Annual Meeting Reception taking place on Thursday, October 26th in Vancouver, British Columbia (award recipient’s expenses will be covered).
Arthritis Consumer Experts’ 10th Annual Arthritis Medications Report Card and Medications Guide: The changing landscapes of reimbursement for arthritis medications in Canada
Arthritis Consumer Experts (ACE) has released its 10th Annual JointHealth™ Arthritis Medications Report Card and Medications Guide – the reliable, quick reference tool to help you evaluate where your province ranks in terms of providing reimbursement for medications to treat inflammatory forms of arthritis.
Commenting on the changing landscape for reimbursement of arthritis medications, ACE President, Cheryl Koehn stated: “Any new pharmaceutical policy that promises to deliver significant drug plan savings must do so without compromising patient safety and efficacy. ACE has also consistently advocated that any drug plan cost savings related to changes in policy that affect arthritis medication reimbursement access should be reinvested back to drug formulary budgets to support the listing of new arthritis medicines and other non-medication related initiatives to improve models of arthritis care such as creating rheumatology nursing billing codes.”
The JointHealth™ Arthritis Medications Report Card and Medications Guide gives you information on the most commonly prescribed medications for inflammatory types of arthritis, such as rheumatoid arthritis, axial spondyloarthritis, psoriatic arthritis or juvenile idiopathic arthritis.