All posts related to "arthritis consumer experts"

Arthritis Awareness Month: ArthritisMadLibs takes Twitter by storm

Multi talk bubblesArthritis 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:

Top 5 Tweets by impressions Continue reading

Cheryl Koehn: Yes, You Can – An excerpt from Innervoice.life

Innervoice.life is a website dedicated to telling the inspiring stories of athletes describing their journeys to health, discovery and personal victories. Below is an excerpt of the most recent “innervoice” story, featuring ACE President and Founder Cheryl Koehn.

Picture of Cheryl Koehn

Picture from Innervoice.life

EMOTIONALLY AND SPIRITUALLY

I no longer play competitive volleyball, or any other sport for that matter. But the inner high-performance athlete is alive and well inside of me, and helps me overcome challenges every minute of every day. Not long after I retired from competitive volleyball, I developed severe rheumatoid arthritis (RA), an autoimmune disease that leads to uncontrolled inflammation and joint swelling, immobility and eventual destruction. From the day I was diagnosed, something inside of me said “don’t stop moving, keep trying to do the things you love”. Little did I know, that perspective is what research would prove years later: high intensity exercise in the setting of moderate to severe rheumatoid arthritis is a good thing, as long as you protect your joints from improper movement or stress, or when they are actively inflamed.

I approach my life with rheumatoid arthritis the exact same way I did my competitive sporting life. Emotionally and spiritually, I can be tougher than the toughest times I face. I may not be able to do half of what I used to physically, but I have finely honed team skills that help me in the community development work I lead. I recognise that overcoming a challenge requires thoughtful planning and work, and then more work, before you can “win”. Nothing came easy for me on the volleyball court, and the same is true in life. I know that is very cliché, but clichés exist for a reason; they’re usually true!

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Pour le souligner, le comité ACE lance une campagne sur Twitter : #ArthritisMadLibs

Au Canada, septembre est le mois de sensibilisation à l’arthrite. Pour le souligner, le comité ACE lance une campagne sur Twitter : #ArthritisMadLibs

La campagne #ArthritisMadLibs pendant le mois de sensibilisation à l’arthrite : une occasion de réécrire l’histoire du patient arthritique, un mot à la fois.

 l’arthrite
Le comité ACE (Arthritis Consumer Experts) souligne le mois de sensibilisation à l’arthrite en lançant une campagne sur Twitter : #ArthritisMadLibs. L’objectif est d’aider les autres à comprendre l’impact de l’arthrite et à prendre des décisions éclairées à propos du développement de nouveaux programmes sur l’arthrite destinés autant aux patients qu’aux fournisseurs de soins.

Mad Libs est un jeu de mots dans lequel certains mots essentiels à une phrase sont laissés en blanc pour que le joueur puisse y substituer ses propres mots. Comme nous en apprenons toujours grâce aux sondages réalisés chez les patients arthritiques à travers le monde, la communication est un élément essentiel de la relation entre les patients et leurs médecins, rhumatologues, infirmières, pharmaciens, amis, collègues et chercheurs. La campagne #ArthritisMadLibs est l’occasion de réécrire l’histoire du patient arthritique – un mot à la fois.

Pendant le mois de sensibilisation à l’arthrite, le comité ACE publiera quotidiennement sur Twitter des micromessages de jeu Mad Libs sur 5 thèmes différents : les patients, le travail, la famille et les amis, les soins de santé et les animaux. Pour y participer, suivez le mot-clic #ArthritisMadLibs sur notre compte Twitter @ACEJointHealth. Si vous n’avez pas de compte Twitter, mais que vous désirez tout de même participer au jeu, suivez notre fil Twitter sur le site Web (www.jointhealth.org) et faites parvenir vos réponses par courriel à feedback@jointhealth.org. Pour alimenter la campagne, aimez, retweetez et répondez sur Twitter. Le Réseau de diffusion sur l’arthrite (www.arthritisbroadcastnetwork.org) offrira chaque semaine un résumé Mad Libs !

Arthritis Awareness Month in Canada: Arthritis Consumer Experts’ #ArthritisMadLibs Twitter Campaign

#ArthritisMadLibs is a chance to re-write the arthritis patient story during Arthritis Awareness Month – one word at a time.

word cloud of arthritis words for #ArthritisMadLibsArthritis 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 feedback@jointhealth.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.

Demande de rétroaction de patients sur le guselkumab dans le traitement du psoriasis en plaques, de modéré à grave

Stickman with megaphone calling for patient inputSouffrez-vous de psoriasis en plaques, de modéré à grave, ou prodiguez-vous des soins à quelqu’un qui en souffre ? 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 guselkumab dans le traitement du psoriasis en plaques, de modéré à grave.

Le guselkumab appartient à la classe des modificateurs de la réponse biologique, utilisés contre l’arthrite inflammatoire. Le médicament bloque l’action de l’interleukine 23 (IL 23), une cytokine jouant un rôle essentiel dans le psoriasis en plaques.

Le PCEM fait partie de l’Agence canadienne des médicaments et des technologies de la santé (ACMTS). 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 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 le remboursement des médicaments, nous désirons recueillir vos commentaires pour communication au PCEM.

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

Call for patient input on guselkumab for moderate to severe plaque psoriasis

Stickman with megaphone calling for patient inputDo you have moderate to severe plaque psoriasis 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 to patient organizations on the manufacturer’s submission for guselkumab for the treatment of moderate to severe plaque psoriasis.

Guselkumab belongs to the biologic response modifier class of inflammatory arthritis medications. It works by blocking the interleukin (IL)-23 molecule, a cytokine that plays a key role in plaque psoriasis.

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 public reimbursement of medications, we would like to gather your views and share them with the CDR.

These are the questions they are asking: Continue reading