All posts related to "patients"

Demande de rétroaction de patients sur le brodalumab dans le traitement du psoriasis en plaques, de modéré à sévère

Stickman with megaphone calling for patient inputDemande de rétroaction de patients sur le brodalumab dans le traitement du psoriasis en plaques, de modéré à sévère

Souffrez-vous de psoriasis en plaques de modéré à sévère ? Vos commentaires seraient précieux.

Le programme commun d’évaluation des médicaments (PCEM) invite actuellement les patients et leurs fournisseurs de soins à faire parvenir aux organismes représentant les patients leurs suggestions et commentaires sur la présentation par le fabricant du brodalumab dans le traitement du psoriasis en plaques, de modéré à sévère.

Le PCEM fait partie de l’Agence canadienne des médicaments et des technologies de la santé. Le PCEM examine avec objectivité et rigueur l’efficacité et la rentabilité des médicaments et fournit des recommandations aux régimes d’assurance-médicaments publics du Canada (à l’exception du Québec) quant à leur inscription sur la liste des médicaments assurés.

Afin de l’aider dans son processus de recommandation, le PCEM accepte la rétroaction de groupe de patients comme le comité ACE (Arthritis Consumer Experts). Parce que la rétroaction de patients est essentielle à la prise de décision du gouvernement sur les médicaments, nous désirons recueillir vos commentaires pour communication au PCEM.

Voici l’information que recherche le PCEM dans ce dossier particulier : Continue reading

“ACE @ 18”, what does that mean? – By Cheryl Koehn

“ACE @ 18”, what does that mean?

I was recently at a meeting when a prominent doctor (from another disease area) told me that working with the arthritis community and government to improve models of care for people with arthritis was a “pipe dream”. His comment was in response to a presentation I had just given to about 50 clinical and research specialist physicians. At first, I was taken aback by his comment as I stood at the podium. Thankfully, I knew where I and Arthritis Consumer Experts (ACE) had come from over the last 18 years. We’ve been on a journey to change and save lives by volunteering and working directly with fellow patients and their families, medical and research experts and policy makers. That journey hasn’t been easy; quite the contrary. For the first five years of ACE’s existence, powerful people and organizations wanted us to “go away”. Why? Well, we upset the status quo by bringing to the forefront the experience and voices of patients – real people living with real arthritis – and by refusing to be discouraged and pushed away.

I’m telling you, our valued members, subscribers, fans and followers, this, because I want you to know that 18 years later, we’re going to keep doing what we’ve always done, and more, and we want you to continue to be a part of the journey. You are ACE. You are the experience, the pain, the struggle, the wins, the joy, the challenges we represent. We are family. Brothers and sisters in arthritis, every day, all day.

ACE Cheryl Koehn guest badge at ACRWe started with one person, me. Today, we are the largest arthritis patient organization in Canada with 40,000 members and subscribers across the country. Our membership base is largest in Ontario, Quebec, British Columbia and Alberta, but we have “ACE-ers” in every single province and territory. Whether you live on the West or East coast or in Centre, what we hear from you is the consistent:

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Nouvelles de l’ACR : Combler les lacunes mondiales dans les soins de l’arthrite

ACR Annual Meeting BannerDans le cadre du congrès annuel de l’American College of Rheumatology (ACR) / Association des professionnels de la santé pour l’arthrite (APSA), le comité ACE a fait une présentation par affiche sur une enquête mondiale, « Modèles de soins pour les patients souffrant de polyarthrite rhumatoïde : une enquête internationale », menée par le Réseau PR mondial dont font partie le comité ACE et 20 autres organisations de défense de patients. Cette enquête a été conçue pour recueillir le point de vue du patient sur les modèles de soins de la polyarthrite rhumatoïde (PR) ainsi que pour sonder le degré de connaissance des patients de leur maladie et des médicaments disponibles.

Cette enquête a révélé le besoin urgent d’améliorer la sensibilisation aux modèles de soins de la PR, aux médicaments et à tout le système de soins pendant tous les stades de la maladie. L’un des principaux constats fut le besoin d’offrir aux patients et au public plus d’information et d’éducation sur la polyarthrite rhumatoïde afin d’apporter aux personnes atteintes tout le soutien nécessaire et plus précisément, pour les aider à mieux décrire leurs symptômes et à prendre part aux décisions en collaboration avec leur rhumatologue.

Au cours du congrès annuel de l’ACR, un panel examinant comment combler les lacunes mondiales dans les soins de l’arthrite s’est penché tout particulièrement sur les moyens d’améliorer les soins aux patients habitant les zones mal desservies.

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ACR News: Bridging global gaps in arthritis care

ACR Annual Meeting BannerAt 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.

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Global RA Network present results of international survey of the rheumatoid arthritis patient care experience at ACR / ARHP Annual Meeting

Global RA Network present results of international survey of the rheumatoid arthritis patient care experience at ACR / ARHP Annual Meeting

The Global RA Network, founded by patient-led national arthritis organizations from 21 countries, presented the results of a global survey – “Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey”1 – investigating patient-reported experiences of rheumatoid arthritis models of care at the American College of Rheumatology’s (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Meeting.

GlobalRANetwork Poster at ACRAt an ACR poster session on November 5, 2017, Cheryl Koehn, lead author of the abstract and President of Arthritis Consumer Experts, Canada’s largest patient-led arthritis organization, said: “The survey highlights the difference between best practice RA models of care and the patient’s lived experience of managing a life-long condition like RA. The survey will also advance collaboration between the RA patient organizations involved in the Global RA Network. By analyzing and interpreting the survey results for each participating country, the Global RA Network can develop education and information initiatives to raise awareness of symptoms and ensure RA patients receive the best possible care.”

The first crowd-sourced research of its kind designed by RA patients, for patients, to better learn what their care experiences are like in the their country, the global survey fielded responses from 2,690 respondents from 14 countries in Europe, the Middle East, and North and South America. The survey highlights self-reported gaps and delays in all five key elements of a standardized RA models of care, including significant delays to diagnosis and specialist access globally, delayed therapy effectiveness assessment, and additional education/information to increase the level of confidence to describe RA and improve effective self-care practice.

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Le Réseau PR mondial lance son site Web

Le comité ACE (Arthritis Consumer Experts) dirige la création du premier réseau mondial regroupant les organisations de patients atteints de PR.
Global RA Network Banner
Le comité ACE a collaboré à la création du premier réseau mondial regroupant les organisations de patients atteints de polyarthrite rhumatoïde. Fondé en 2016 par des organisations de patients souffrant de PR et des leaders de 18 pays, le Réseau PR mondial tisse des relations internationales, identifie des initiatives et des objectifs communs et travaille à les réaliser afin d’améliorer la qualité de vie des personnes atteintes de PR partout dans le monde.

Le Réseau PR mondial lance aujourd’hui son propre site Web : http://globalranetwork.org/. Ce site constitue, pour les personnes atteintes de PR, les fournisseurs de soins et les gouvernements, un point de rencontre en ligne de même qu’une plateforme d’échanges sur le travail en cours et les ressources en matière d’information et d’éducation.

La première initiative du Réseau PR mondial aura été de mener à bien une enquête auprès de patients quant à leur propre expérience des modèles de soins de la PR. Les conclusions de cette enquête seront présentées au cours de la prochaine rencontre scientifique annuelle de l’American College of Rheumatology, qui se tiendra le 5 novembre 2017.

À la lumière des constats de l’enquête, le Réseau PR mondial élaborera des programmes d’information et d’éducation qui comprendront également des initiatives de défense du dossier de la PR susceptibles d’améliorer la perception des patients du type et de la qualité des soins qu’ils devraient recevoir et permettre ainsi, à tous les pays membres, d’obtenir les meilleurs résultats de traitement possibles.

Arthritis community leaders launch new patient portal to improve patient care in BC

Arthritis community leaders launch new patient portal to improve patient care in BC

ArthritisBC+Me Portal helps BC patients learn about arthritis programs and resources

ArthritisBC+Me Portal banner for arthritis in bc

 

A group of BC’s leading arthritis specialists, researchers and patient groups are pleased to announce the launch of the ArthritisBC+Me portal designed to help BC patients learn about arthritis and local programs best suited to their needs. The first of its kind in Canada, the portal represents the commitment of the community partners – Arthritis Consumer Experts, Arthritis Research Canada, Mary Pack Arthritis Program, The Arthritis Society and the BC Society of Rheumatologists – to making arthritis information and services more accessible to the estimated 1 in 5 British Columbians who are living with arthritis.
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Demande de rétroaction de patients sur le tocilizumab (Actemra®) dans le traitement de la maladie de Horton.

Stickman with megaphone calling for patient inputDemande de rétroaction de patients sur le tocilizumab (Actemra®) dans le traitement de la maladie de Horton.

Souffrez-vous de la maladie de Horton ? Vos commentaires seraient précieux.

Le Programme commun d’évaluation des médicaments (PCEM) demande actuellement que les patients et leurs fournisseurs de soins fassent parvenir aux organismes regroupant les patients leurs commentaires et suggestions sur la présentation par le fabricant du tocilizumab (Actemra®) dans le traitement de la maladie de Horton.

Partie intégrante de l’Agence canadienne des médicaments et des technologies de la santé, le PCEM examine avec objectivité et rigueur l’efficacité et la rentabilité des médicaments et fournit des recommandations aux régimes d’assurance-médicaments (à l’exception du Québec) quant à leur inscription sur la liste des médicaments assurés.

Afin de l’aider dans son processus de recommandation, le PCEM accepte la rétroaction d’organisations et de groupes de patients comme le comité ACE (Arthritis Consumer Experts). Parce que la rétroaction de patients est essentielle à la prise de décision du gouvernement sur les médicaments, nous désirons recueillir vos commentaires pour communication au PCEM.

Voici l’information que recherche le PCEM dans ce dossier particulier : Continue reading

Patients with rheumatoid arthritis are now living longer

Image of an angel statute to represent lower mortality rate in rheumatoid arthritis patientsA study published by researchers at the University of British Columbia suggests that rheumatoid arthritis (RA) patients are no longer facing a higher risk of death than the general population. The study analyzed mortality data and looked at death rates among RA patients versus deaths among a control group of the general population.

The study included an estimated 25,000 people. Patients were divided into two groups – the first one was those with RA cases diagnosed between the years 1996 and 2000 and the second group was those with RA cases diagnosed from 2001 to 2006. Researchers looked at and tracked doctor visit records and other patient information through the year 2010.

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The cost of non-adherence to prescribed medications

Pills and needles to portray medication nonadherenceAn article published in the Annals of Internal Medicine estimated that non-adherence resulted in approximately 125,000 deaths and at least 10 percent of hospitalizations, costing US health care system $100 and $289 billion a year.

The article reports that “studies have consistently shown that 20 percent to 30 percent of medication prescriptions are never filled, and that approximately 50 percent of medications for chronic diseases are not taken as prescribed. The review found that for people who do take prescription medications, they only take about half the prescribed doses.

Researchers from Northwestern University found that one-third of kidney transplant patients don’t take their anti-rejection medications. Other studies show that 41 percent of heart attack patients don’t take their blood pressure medications and only 50 percent of children with asthma use their inhalers as prescribed.

In an article in the New York Times, Dr. Bruce Bender, co-director of the Centre for Health Promotion at National Jewish Health in Denver, explained: “When people don’t take the medications prescribed for them, emergency department visits and hospitalizations increase and more people die. Non-adherence is a huge problem, and there’s no one solution because there are many different reasons why it happens.”

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