All posts related to "arthritis consumer experts"

JointHealth™ insight – #CRArthritis: les tendances en matière de recherche sur l’arthrite

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Dans le numéro d’avril du JointHealth™ insight, insight publié par le comité ACE (Arthritis Consumer Experts), nous explorons le concept de « Bâtir des ponts », thème de l’Assemblée scientifique annuelle de cette année de l’Association canadienne de rhumatologie (ACR) et de l’Association des professionnels de la santé pour l’arthrite (APSA), et cherchons à savoir ce qu’il signifie pour les patients arthritiques et les fournisseurs de soins de santé. Pour clarifier ce concept, nous avons préparé un guide d’orientation sur les entrevues réalisées dans le cadre de l’événement #CRArthritis de cette année, soulignant les points essentiels abordés pendant l’événement.

En plus des sujets d’intérêt pour les patients, les entrevues fournissent de l’information sur :

  • Bâtir des ponts entre les patients, les fournisseurs de soins de santé, les chercheurs et les professionnels paramédicaux
  • Juste de l’arthrose ?
  • Les enfants et l’arthrite
  • Travailler quand on souffre d’arthrite
  • Recherche spécifique ciblée
  • Quoi de neuf avec les médicaments contre l’arthrite ?
  • L’arthrite en tête
  • Sujets d’actualité chez les organisations de patients arthritiques
  • Modèles de soins de l’arthrite

Toutes les entrevues sont accessibles sur YouTube, Twitter et Facebook.

Pour obtenir les sous-titres en français, veuillez régler les paramètres YouTube pour chaque entrevue.

On election day, make your voice count.

The general election in Prince Edward Island is scheduled for April 23, 2019. What changes would you like to see in models of arthritis care?

Arthritis is a chronic disease that has a devastating and debilitating effect on the lives of more than 6 million Canadians. More than 25,000 Prince Edward Island residents are living with arthritis – approximately one in five. Within a generation, more than one in four Islanders are expected to have the most disabling and life-threatening types – osteoarthritis and rheumatoid arthritis. 

Arthritis is the leading cause of disability and work disability in P.E.I., with nearly three out of every five people with arthritis of working age. 

Considering the prevalence of the disease and its significant cost to individuals and society, arthritis should be an issue of great importance to candidates running for office. 

ACE sent an open letter and a survey to candidates running in the Prince Edward Island election. As part of its core government outreach activities and in the spirit of non-partisanship, ACE asks each candidate to share how government can improve prevention, treatment and care in Prince Edward Island. 

The questionnaire asked the following questions:

  • What will your government do to bring a high quality, standardized evidence-based model of arthritis care for all Prince Edward Island residents?
  • What will your government do to introduce patient education and exercise programs, such as GLA:D, that have been proven to significantly reduce hip or knee osteoarthritis symptoms?
  • What will your government do to improve the uptake of biosimilars and increase accessibility to life saving medications and reduce out-of-pocket costs for Prince Edward Island residents living with inflammatory arthritis?
  • What will your government do to improve the healthcare and lives of Aboriginals living with arthritis in Prince Edward Island?
  • How will your government establish better prevention programs and facilitate flexible work arrangements to help reduce the direct and indirect costs of arthritis to Prince Edward Island employers and the Prince Edward Island economy?
  • Will your government take steps to increase the number of rheumatologists and trained arthritis professionals to ensure timely, specialized care for Prince Edward Island patients with arthritis?

ACE will be collecting Party and individual candidate’s responses. Responses will be posted on the Prince Edward Island Election 2019 page as we receive them. 

If you have comments, questions, or concerns about any of the answers provided, please take the time to contact the parties. 

Did their responses help you decide how you will vote? Tell us what you think of their answers. Please contact us by email.

Caregivers’ role in models of care for inflammatory arthritis

Caregivers play an important role throughout the inflammatory arthritis models of care. The nurse at your doctor’s office serves as a first line of contact between you and your doctor. Your partner and family members at home provide physical and emotional support – be it helping you with groceries, taking you to your doctor’s appointment, or listening to your concerns about your treatment therapies. On Caregiver Day, we want to thank you to all the caregivers who are providing care worldwide. Thank you for making a difference in the lives of patients living with arthritis!

Plant with heart shaped flowers to show thanks on caregiver day

What is an inflammatory arthritis model of care?

“Models of care are very important for chronic diseases such as inflammatory arthritis because they facilitate early efficient diagnosis and delivery of holistic health care services, help in the realignment of existing resources to optimize health system efficiencies, and identify the need for new resources. Arthritis patients require an integrated team-based approach to care that includes a number of health care providers over a period of time.”

Dr. Diane Mosher, Professor of Medicine and the Chief of the Division of Rheumatology at the University of Calgary
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JointHealth™ insight – February 2019

Mental Health and arthritis: a complex relationship

In the latest issue of JointHealth™ insight, Arthritis Consumer Experts (ACE) reports on the important relationship between mental health and arthritis. People with inflammatory arthritis are more likely to experience mental health conditions such as depression, anxiety, and “brain fog” than the general population.

This issue of JointHealth™ insight will cover the following:

  • Relationships between depression, “brain fog” and inflammatory arthritis
  • Burden of depression
  • Recognizing and managing depression and anxiety
  • Prevent depression and anxiety
  • Love, sex, and arthritis*

*Please be advised that the content in this section contain graphics of “joint friendly” positions during sex and may not be appropriate for you or others in your household. The graphics are excerpted from the book, “Rheumatoid Arthritis: Plan to Win”, by Cheryl Koehn, Dr. John Esdaile and Taysha Palmer published by Oxford University Press, 2002.

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JointHealth™ insight – December 2018


Happy Holidays from ACE!

A time to give thanks, reflect on the past, and look forward to the future

“’Tis the season” when our thoughts turn to sharing, caring and remembering; a perfect time to thank all of Arthritis Consumer Experts’ members, subscribers, research partners and supporters for their ongoing engagement and support. Together, we remain committed to helping people living with arthritis across Canada through research-based information and education. 

“When you help a person living with arthritis, you are passing on the message that “you are not alone, we are with you, don’t be afraid.” That message needs to be shared not just during the holidays, but throughout the year.

Today, arthritis is Canada’s most prevalent disease and it’s far more serious than most people realize. Approximately six million adults – one in five – have doctor-diagnosed arthritis. Two-thirds are under the age of 65. Arthritis and musculoskeletal conditions are the leading cause of work disability in Canada. In other words, we are a “big deal” to the health care system and to society.

In 2019, ACE will remain focussed on helping all Canadians living, playing, working and raising families with rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, osteoarthritis and the many other forms of the disease. As it has for the past 20 years, our work will reflect your needs and aspirations. As Canada’s largest and longest running patient-led arthritis organization, we will continue to fight for the rights of people living with the disease; to work with healthcare professionals and governments to develop services and policies that reflect a world as seen through our eyes and experiences; to inform the implementation of models of care to better help patients like us in their disease journeys; and to volunteer and work side-by-side with Canada’s brightest arthritis researchers and knowledge translators.

Over the past two weeks, you’ve graciously shared your wishes as part of ACE’s #MyArthritisWishList social media campaign – sincerest thanks for your participation in this fun and inspiring campaign. Your wishes remind us that when you live with arthritis, that means “every day, all day.” For many of us there are days with no break from pain, stiffness, depression, relationship challenges; the list is long. Yet, despite it all, we rise above from a deep reservoir of resilience.

“The worldwide arthritis community is my hero.”

Every day, I’m constantly inspired by our arthritis community, made up of people who are brave, funny, brilliant, insightful, industrious, and so many other wonderful qualities. People trying to be all that they can be, while also trying to kick arthritis to the curb. The worldwide arthritis community is my hero.

On behalf of everyone at ACE, I wish you joy and peace this holiday season.

Sincerely
Cheryl Koehn
Person with rheumatoid arthritis
Founder and President of Arthritis Consumer Experts


Arthritis Consumer Experts’ Year in Review

In 2018, Arthritis Consumer Experts (ACE) worked to improve the lives of people living with arthritis through education, empowerment and advocacy. With help from the arthritis patient community, healthcare professionals, researchers and partner organizations, ACE submitted patient inputs to CADTH and provincial drug plans, participated in conferences, workshops and webinars, launched JointHealth™ Education Advanced Therapies, provided updates from the American College of Rheumatology and European League Against Rheumatism annual meetings, and advocated on behalf of our community with public and private health policymakers.

Thank you to our members and subscribers for making 2018 one of the best years yet! Here are the monthly highlights from this year and some holiday tipsto get you through the rest of the year.

JointHealth™ insight – numéro novembre 2018

Rapport spécial : l’arthrite dans la population active canadienne 

French JHI Slide
Dans le dernier numéro du JointHealth™ insight, le comité ACE (Arthritis Consumer Experts) livre un rapport sur l’arthrite chez la population active canadienne.

Au Canada, l’arthrite constitue la principale cause d’incapacité au travail, entraînant une piètre qualité de vie et des pertes d’emploi. Les membres ACE nous ont raconté leurs histoires émaillées d’efforts constants pour s’acquitter de leurs responsabilités au travail tout en gérant leur maladie, en particulier leurs symptômes tels que la douleur, la fatigue et la raideur, souvent accompagnés d’un déclin progressif des fonctions physiques.

Selon Statistique Canada, on estime à 13 milliards $ le coût annuel de l’incapacité de la population active due à l’arthrite et aux maladies musculosquelettiques. Les études ont démontré que plusieurs personnes ayant reçu un diagnostic de polyarthrite rhumatoïde (PR) sont contraintes de quitter la population active de façon prématurée et gagnent un salaire moins élevé que les personnes qui n’en sont pas atteintes.

Ce numéro du JointHealth™ insight couvre cet important sujet de l’arthrite au travail et traite également des sujets suivants :

  • Discussion sur les récipiendaires d’un prix Meilleurs milieux de travail au Canada pour les employés atteints d’arthrite : le Gouvernement du Yukon et l’Université de Montréal.
  • Regard sur l’impact de l’arthrite sur la population active au Canada et les défis les plus courants auxquels sont confrontés les employés qui en sont atteints.
  • Entrevue particulière avec Dre Lacaille à propos de son programme éducatif en ligne Making it Work™, conçu pour aider les personnes atteintes d’arthrite inflammatoire à gérer les défis liés à l’arthrite au travail.

JointHealth™ insight – November 2018

Special Report: Arthritis in the Canadian Workforce 

JHI Slide

 

In the latest issue of JointHealth™ insight, Arthritis Consumer Experts (ACE) reports on arthritis in the Canadian workforce.

Arthritis is the most common cause of work disability in Canada, resulting in both poor quality of life and workplace limitations. ACE members have told us about the challenge of managing workplace responsibilities while managing their disease, including symptoms such as pain, fatigue, and stiffness, often with a gradual loss of physical function.

According to Statistics Canada, the estimated annual cost of workplace disability from arthritis and musculoskeletal conditions is $13.6 billion. Studies have also shown that many people diagnosed with rheumatoid arthritis (RA) are forced to leave the workforce prematurely and earn less than those living without the disease.

This issue of JointHealth™ insight covers the important topic of arthritis in the workplace, and includes:

  • A discussion on the 2018 winners of Canada’s Best Workplaces for Employees Living with Arthritis award: The Government of Yukon and Université de Montréal.
  • A look at the impact of arthritis on the Canadian work force, and common challenges faced by employees with arthritis.
  • A special interview with Dr. Lacaille about her online education program, Making it Work™. The program is designed to help people with inflammatory arthritis deal with employment issues related to their disease.

Le comité ACE (Arthritis Consumer Experts) qualifie le Gouvernement du Yukon et l’Université de Montréal de « Meilleurs milieux de travail pour les employés atteints d’arthrite

Best Arthritis Workplaces BannerEn conclusion de sa quatrième recherche annuelle partout au Canada, le comité ACE (Arthritis Consumer Experts) dévoile aujourd’hui les gagnants d’un prix Meilleurs milieux de travail au Canada pour les employés atteints d’arthrite : le Gouvernement du Yukon et l’Université de Montréal.

Le comité ACE appuie sans réserve les efforts des employeurs canadiens dans l’établissement de politiques assurant un niveau d’avantages de grande qualité et des conditions de travail flexibles pour les employés atteints d’arthrite au Canada. Pour les employés atteints de maladies chroniques telles que l’arthrite, le combat implique également de concilier au quotidien les exigences liées à gestion de leur maladie avec celles d’un travail « accompagné » de symptômes comme la douleur, la fatigue, le dysfonctionnement articulaire et l’immobilité.

« Au Canada, l’arthrite et les maladies musculosquelettiques constituent la principale cause d’incapacité au travail », affirme Cheryl Koehn, présidente et fondatrice du comité ACE (Arthritis Consumer Experts). « Pour les employés atteints d’arthrite, gérer les défis au travail est un élément important de la gestion efficace de leur maladie. Nous invitons tous les promoteurs canadiens à examiner attentivement leur régime de soins de santé en fonction de la perspective des employés atteints d’arthrite. »
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Arthritis Consumer Experts Awards Government of Yukon and Université de Montréal as Best Workplaces for Employees Living with Arthritis

Best Arthritis Workplaces Winner Banner

After its fourth annual search across Canada, Arthritis Consumer Experts (ACE) today announced the winners of Canada’s Best Workplaces for Employees Living with Arthritis award: the Government of Yukon and Université de Montréal.

ACE is highly supportive of Canadian employers’ efforts to develop policies to ensure high quality health benefits and flexible work arrangements for Canadian workers living with arthritis. For workers with chronic diseases such as arthritis, the challenge involves balancing the demands of managing their disease and of working ‘around’ symptoms such as daily pain, fatigue, joint dysfunction and immobility.

“Arthritis and musculoskeletal conditions are the leading cause of work disability in Canada,” said Cheryl Koehn, Founder and President, Arthritis Consumer Experts. “Managing challenges at work is an important element of disease management for employees living with arthritis. We’re calling on all plan sponsors in Canada to look carefully at their health benefit plans from the perspective of employees living with arthritis.”

Based on workplace insights shared by employees and company managers, the Government of Yukon and Université de Montréal stood out for their supportive work environments highlighted by chronic disease awareness, high quality benefits, wellness programs and prevention practices.

“Supporting all our employees to fully participate in the workplace makes for a more engaged workforce and ultimately better service to the Yukon public. That is why the health, safety and wellbeing of our employees is of paramount importance. We provide flexible working hours, a robust benefits program, and workplace accommodations to help our employees safely stay at work and maintain a healthy work-life balance,” said Ms. Pamela Muir, Public Service Commissioner, the Government of Yukon.
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Le Mois de sensibilisation à l’arthrite au Canada : #WhereIsArthritis, une campagne sur les réseaux sociaux du comité ACE 

#WhereIsArthritis Banner graphicLe Mois de sensibilisation à l’arthrite au Canada : #WhereIsArthritis, une campagne sur les réseaux sociaux du comité ACE 

Le comité ACE (Arthritis Consumer Experts) souligne le Mois de sensibilisation à l’arthrite au Canada en lançant une campagne sur les réseaux sociaux dont le mot-clic est #WhereIsArthritis. La campagne #WhereIsArthritis est une façon amusante de vous familiariser avec les ressources offertes en ligne par le comité ACE, lesquelles sont conçues pour vous aider à mieux vivre avec l’arthrite. En y participant, vous suscitez l’intérêt envers l’arthrite tout en vous informant et en informant les autres autour de vous au sujet des différentes formes de cette maladie et en manifestant votre soutien à ceux et celles qui en souffrent.

Tous les jours, du samedi 1er septembre au dimanche 30 septembre 2018 :

  • Vous trouverez une question #WhereIsArthritis et un indice de la réponse sur le compte Twitter (@ACEJointHealth) et la page Facebook (@ACEJointHealth)du comité ACE
  • Tweetez, publiez sur Facebook ou envoyez-nous la réponse par courriel – N’oubliez pas d’inclure le mot-clic #WhereIsArthritis !

Voici un exemple d’une question et réponse #WhereIsArthritis :

Question : Q1 : Quels sont les quatre traitements non médicamenteux mentionnés sur la page du site Web du comité ACE ? Indice : Voir l’onglet À propos de l’arthrite » http://bit.ly/2MZZaUB #WhereIsArthritis

Réponse : Hé @ACEJointHealth, la réponse est : vitamines et minéraux, régime alimentaire et nutrition, physiothérapie, ergothérapie ! #WhereIsArthritis

Pour participer, suivez #WhereIsArthritis sur notre compte Twitter @ACEJointHealth et notre page Facebook Arthritis Consumer Experts. En septembre, aidez-nous à promouvoir la sensibilisation à l’arthrite :

  • aimez, retweetez et répondez sur Twitter en utilisant le mot-clic #WhereIsArthritis; ou,
  • aimez, commentez et partagez sur Facebook en utilisant le mot-clic #WhereIsArthritis; ou,
  • envoyez vos réponses par courriel à feedback@jointhealth.org avec #WhereIsArthritis dans le champ objet

Chaque fois que vous intervenez d’une des façons suggérées sur votre compte social personnel, votre nom sera inscrit au tirage d’une carte-cadeau Amazon d’une valeur de 50 $. Le tirage sera effectué le mercredi 3 octobre 2018 et le gagnant en sera avisé par message direct ou par courriel.

Découvrons ensemble où se cache l’arthrite (#WhereIsArthritis) et des ressources pour y faire face !