All posts related to "patient"

February 21-23: Join us for our #CRArthritis Facebook and Twitter Live event!

#CRArthritis Facebook and Twitter Live BannerWant to know what Canada’s leading rheumatologists are thinking? Join us for our #CRArthritis Facebook and Twitter Live event! 

Arthritis Consumer Experts hosts the #CRArthritis Facebook and Twitter Live event

Powered by ACE and supported by representatives from the Arthritis Patient Advisory Board of Arthritis Research Canada and the Canadian Spondylitis Association, Arthritis Broadcast Network (ABN) will be interviewing keynote speakers, meeting attendees, patients living with arthritis, and disease experts. We invite you to participate in the Facebook and Twitter Live event. Like, share and retweet the live interviews, send us your comments or questions through Facebook and Twitter during the interviews.

Join the conversation at the Arthritis Broadcast Network Facebook page or Twitter (@ArthritisNetwrk) feed using #CRArthritis. Interviews will take place from Wednesday, February 21st until Friday, February 23rd.

Discussion topics include:

  • Latest advances in the treatment and care of rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, osteoarthritis and much more;
  • Personalized medicine and arthritis;
  • Discussions with leading physiotherapists and occupational therapists;
  • Use of social media in arthritis patient care and medical research;
  • Getting to know your arthritis consumer-patient community;
  • And much more!

Email your questions in advance to feedback@jointhealth.org or ask them “live” during the event – we look forward to your participation!

JointHealth™ insight – Des soins de l’arthrite qui visent la « satisfaction du patient » : ce que vous avez partagé avec le comité ACE

Des soins de l’arthrite qui visent la « satisfaction du patient » : ce que vous avez partagé avec le comité ACE

JointHealth insight French bannerDans ce premier numéro de 2018 du JointHealth™ insight publié par le comité ACE (Arthritis Consumer Experts), nous partageons les résultats de trois sondages menés auprès de nos membres vers la fin de 2017 et grâce auxquels nous avons appris de vous, la personne atteinte d’arthrite (ou d’un membre de votre famille ou aidant), à quoi ressemble votre expérience de la maladie et votre cheminement dans le système de santé. Avez-vous obtenu cette « satisfaction du patient » au degré désiré ?

Dans ce numéro, vous pourrez en lire plus sur :

  • Vivre avec l’arthrite – un regard personnel
  • Fixer des objectifs de traitement et discuter des choix de médicaments avec votre professionnel de la santé
  • Les tenants et aboutissants de « l’autogestion » – c’est vous la vedette

… et plus encore.

JointHealth™ insight – Getting “Patient Satisfaction” from Arthritis Health Care: What You Told ACE 

Getting “Patient Satisfaction” from Arthritis Health Care: What You Told ACE 

Banner for JHI EnglishIn Arthritis Consumer Experts’ (ACE) first JointHealth™ insight of 2018, we share the results of three member surveys conducted at the end of 2017 and learn from you, the person with arthritis (or family member or caregiver), what your disease experiences are like and your journey through the health care system. Are you getting “patient satisfaction”?

In this issue, read about:

  • Living with arthritis – a personal look
  • Setting treatment goals and discussing therapy preferences with your health professional
  • Ins and outs of “self-care” – it’s all about you

…and more.

 

It’s time to see your rheumatologist. Let’s record and take notes!

Picture of smartphone and journal with pen for taking notesIt’s time to see your rheumatologist and specialist. Please have your recorder, pens and paper ready.

A study published in Psychological Science provides two hypotheses as to why note-taking is beneficial in a classroom setting. The first hypothesis is called encoding hypothesis, which says that when a person is taking notes, “the processing that occurs” will improve “learning and retention.” The second hypothesis is called the external-storage hypothesis – you learn by being able to look back at your notes, or even the notes of other people.

The same concepts can be applied to your medical appointments and is currently practiced by Dr. James Ryan, a family physician in Ludington, Michigan. With his patients’ approval, Dr. Ryan records their appointments, then uploads the audio file to a secure web platform for his patients. The recordings are annotated so that patients can easily search for specific topics in the conversation. Patients will be empowered and engaged in their own healthcare because they will have a reference of what was discussed. They can give family members access to the recordings as well.

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eROAR2013: A case study on sustaining patient-research collaborative practices

Patient engagement is encouraged from the moment the patient steps into their doctor’s office and has been demonstrated to improve the patient’s overall health outcome. In recent years, the term “patient engagement” has emerged in health research and knowledge translation. A study published in the Journal of Participatory Medicine reports on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board of Arthritis Research Canada. Using a case study approach, study authors describe the planning and the event itself, report on the challenges encountered, and note reflections and solutions that are pertinent for sustaining patient-research collaborative practices.

Definition of patient engagement

According to the study, patient engagement in research varies from minimal involvement to more participatory collaboration, and is broadly understood to occur when patients meaningfully and actively collaborate at any stage of the research process, from setting the research agenda to designing the research project, collecting data, and disseminating results. The foundation of patient engagement in health research is based on:

  • the motto “Nothing About Us Without Us” from Charlton J.’s study “Nothing about Us, Without Us: The Dialectics of Disability Oppression and Empowerment”
  • encouraging citizen empowerment through participation and wider societal developments
  • activating “patient as partners” to create patient-centred care and promote shared decision making
  • meeting current research values and ethical concepts such as mutual respect

The history of the Arthritis Patient Advisory Board (APAB) 

The Arthritis Patient Advisory Board (APAB), formerly known as the Consumer Advisory Board (CAB), is comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada (ARC). Their goal is to ensure the patient perspective is represented on research matters related to prevention, treatment and self-management of arthritis. Individually and collectively, they communicate research information and findings to arthritis patients, professional organizations and the general public.

Their mission is “to participate in all components and phases of arthritis research, and serve as a bridge between researchers, people with arthritis, and the community at large.” Since 2006, APAB members have organized annual knowledge translation events called Reaching Out with Arthritis Research in Vancouver, Canada. Each interactive event includes presentations from patients, researchers and health professionals. Topics covered include practical disease management information, best practices in prevention and management of arthritis and case studies from current research.

Planning and Preparation

visual note taken by patient arranged Sam Bradd Continue reading

May is ankylosing spondylitis month! A Q&A session with Michael Mallinson

May is ankylosing spondylitis month and to celebrate, we would like to share this question and answer session Arthritis Consumer Experts did with Michael Mallinson, President of the Canadian Spondylitis Association.

Picture of Michael - President of Canadian Ankylosing Spondylitis Association

Q: Hi, Michael. Can you tell us about your organization?
A: The Canadian Spondylitis Association is a nonprofit national patient association formed in April 2006 to support and to advocate for those suffering from ankylosing spondylitis and associated spondyloarthritis diseases including psoriatic arthritis, enteropathic arthritis and reactive arthritis. Our goal is to be the leader in Canada providing support, education and advocacy for the spondyloarthritis patient community

Q: What are some misconceptions about ankylosing spondylitis?
A: Most people are unaware that AS strikes young people. The typical age of onset is between 17 and 35. Although people are aware that arthritis is a women’s disease, they are surprised when they found out AS has a significantly higher prevalence among men.
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Patient experiences of rheumatoid arthritis models of care: An international survey

As part of an international network of RA patient organizations, Arthritis Consumer Experts invites you to participate in a global survey of RA patients to examine the diagnosis, treatment and care they receive for their RA. The goal of this survey is to understand, from the patient experience and perspective, how current “models of care” for rheumatoid arthritis compare between countries.

Global RA Network Survey BannerYour experience and perspective matter

As a person living with RA, sharing your experiences about the care you receive is vitally important. With your help, we can meet the study goals and develop education and information programs to improve patients’ understanding about RA models of care to enable the best treatment outcomes possible in Canada.

How you can participate

If you agree to participate, you will be asked to answer a survey questionnaire, which should take approximately 10 minutes to complete. All the information gathered during the survey will be combined to protect your privacy and anonymity.

To be eligible to participate in this survey, you must:

  • Be 18 years of age or older
  • Receive health care in Canada
  • Have access to the internet

Thank you for considering our request to participate in this survey. Your participation will help you and other people living with RA in your country know more about the health care they should be receiving.

Please click here to complete the survey.

#CRArthritis Speaker’s Corner – Interviews on patient advocacy

Each of us has the power to change arthritis—together, we can change the way arthritis is perceived by the public, portrayed in the media, and understood by government. As people with arthritis, and their family members and friends, the arthritis community is in a unique position to provide media, government, and healthcare decision-makers with the real story of arthritis.

But none of us can do this alone. One or two voices may be easy to ignore, but speaking together we are powerful. The voice of arthritis—the voices of all of the people who live with the disease, or care about someone who does—is strong and getting stronger every day.

Please take the time to view the interviews below on patient advocacy and learn what passionate people and patient organizations are doing to promote arthritis awareness. Learn the facts about arthritis, and about the discrimination that people with arthritis face every day. Think about your own story, or the story of someone you love. When you’re ready, join with us and take action.

Challenge the misperceptions. Speak up. Tell your story. Change arthritis.

The interviews below are conducted as part of the “CRA Interview Series 2017 – Facebook Live #CRArthritis Speaker’s Corner” event at the CRA Annual Scientific Meeting & AHPA Annual Meeting in Ottawa earlier this month.  Continue reading

Demande de rétroaction de patients sur le biosimilaire étanercept (Sandoz) dans le traitement de la PR, de la SA et de la PJI

Stick man holding megaphoneSouffrez-vous de polyarthrite rhumatoïde, de spondylarthrite ankylosante et de polyarthrite juvénile idiopathique ou prodiguez-vous des soins à quelqu’un qui en souffre ? Vos commentaires seraient précieux.

Santé Canada définit le biosimilaire (parfois appelé produit biologique ultérieur ou PBU) comme un médicament biologique qui présente une similarité établie avec un médicament innovateur (tel que Enbrel®) et qui a fait son entrée sur le marché après l’innovateur auquel il se réfère.

Contrairement aux médicaments plus communs à petites molécules, les médicaments biologiques présentent généralement une complexité moléculaire élevée et sont sensibles aux modifications dans les pratiques de fabrication. Les biosimilaires ne sont pas identiques à leurs produits innovateurs parce que leurs caractéristiques chimiques ne peuvent être copiées avec précision pendant le processus de fabrication. Par conséquent, les biosimilaires possèdent des profils uniques en matière d’efficacité, d’immunogénicité et d’innocuité qui diffèrent de leurs produits innovateurs respectifs.
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Demande de rétroaction de patient sur le traitement de la polyarthrite rhumatoïde

Megaphone GraphicSouffrez-vous de polyarthrite rhumatoïde ou prodiguez-vous des soins à quelqu’un qui en souffre ? Vos commentaires seraient précieux.

Le Programme commun d’évaluation des médicaments (PCEM) accueille actuellement les commentaires et suggestions des patients et des fournisseurs de soins sur la présentation par le fabricant du sarilumab pour le traitement de la polyarthrite rhumatoïde (PR).

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). C’est dans cette optique que nous désirons recueillir vos commentaires pour communication au PCEM.

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