All posts related to "patient engagement"

November 14: Osteoarthritis Action Alliance Lunch and Learn Webinar

EQUIP-ing OA Patients and Health Care Providers Through Patient Engagement in Research with Marie Westby and Cheryl Koehn

The OA Action Alliance Lunch & Learn webinars keep you up-to-date on the latest osteoarthritis research, news and activities. This particular webinar will feature Marie Westby and Cheryl Koehn and will take place on November 14, 2018 at 12:00 pm ET. Webinars are free and open to the public. Webinars are archived on the events page on the OA Action Alliance’s website and on their YouTube channel in case you missed one or can’t get enough!

Please click here to register for the webinar. Osteoarthritis Action Alliance webinar

Marie Westby, PT, PhD is the Physical Therapy Teaching Supervisor in the Mary Pack Arthritis Program in Vancouver, BC and holds a Clinician Scientist position in the Centre for Hip Health and Mobility, Vancouver.
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How Arthritis Impacts Lives – #MyWorldWithArthritis

How Arthritis Impacts Lives – #MyWorldWithArthritis

Arthritis affects an estimated 6 million people in Canada and 54 million in the United States; it can significantly impact daily activities, work, relationships, school and the way people see themselves. With over 100 types of arthritis affecting people of all ages, the patient community is incredibly diverse and so are their experiences.

For World Arthritis Day, we asked our subscribers: “How has arthritis changed your world?”. Our aim was to bring attention to the prevalence of the disease and the different ways that it can impact the lives of individuals. In just a few days, we received 36 responses!

Thank you to everyone who generously shared their stories with us, your participation has helped spread awareness about the seriousness of arthritis and shown others living with the disease that they are not alone.

Thank you note

You can find all of the quotes we received below. To learn more about arthritis, please visit Arthritis Consumer Experts’ Disease Spotlights section.

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“Nothing About Me, Without Me” – Patient Engagement in Research

Patient engagement in research or patient-oriented research refers to patients, their family members and other informal caregivers partaking in research as more than study participants but as members of the research team. For example, involving patients in some or all parts of the research process from deciding what topic is studied, to how the research is conducted to how the findings are presented and used.

Partnering with patients ensures that health research is both relevant and meaningful to the patient community. For example, in rheumatology, patients’ perspectives have been instrumental in broadening the scope of the research agenda to include more patient-relevant factors such as well-being, fatigue and sleep patterns. These are significant aspects of life with inflammatory forms of arthritis, yet until recently the topics were largely ignored or underrepresented in research and outcome measurement. This example depicts why patient engagement is so critical. If researchers do not work with patients how can they know what they are studying is relevant to the population that will be most affected by it? It is in this context that the saying “nothing about me, without me” applies so strongly. Other benefits of patient engagement include enhanced quality of research with more perspectives considered, meaningful role(s) for patients and greater involvement in their communities, co-learning between patient and researchers as well as getting important research findings to a broader audience. Overall, patient engagement is a promising way to improve healthcare services and patient experience.

Model of patient engagement in research by Clayon

Figure that summarizes the components of meaningful patient engagement in research from a patient perspective. Developed by the PIERS Project Team

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