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 Medicinereports 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.
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.
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. Continue reading →
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.
Your 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.
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 →
Souffrez-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. Continue reading →
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 →