It may seem self-evident, but there’s no way to do patient-oriented research without patients. If you’re not focused on patient outcomes, in a way that directly addresses patient concerns, as identified by patients, then you’re simply engaging in business as usual. The best way to orient your research around patients is by including them in the work. This means engaging patients not simply as data or subjects, but as fully-fledged partners.
In the fifth of our ongoing series of Patient-Oriented Research Webinars, we are joined by Alies Maybee, a Patient Advisor, SPOR Lead for Patients Canada and blogger. Alies’ presentation focuses on developing partnerships between researchers and citizens in the creation of patient-oriented research teams.
From her bio: “Alies has a passion to make things better for patients and families as a result of her experiences as a patient. This drove her to become involved at her local hospital where she co-chairs the Community Engagement Council and is a patient and family advisor. She is a patient partner on several research teams and leads a SPOR Demonstration Project looking into the experience of patients as partners in research. She has also served for three years on the Research Management Committee of the Canadian Frailty Network.”
The slides from Alies’ presentation are available from the NL SUPPORT website, along with the rest of the webinars in the series; you can watch this and all the other recordings on our YouTube channel.
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