{"id":2743,"date":"2024-06-03T09:58:01","date_gmt":"2024-06-03T16:58:01","guid":{"rendered":"https:\/\/pxphub.org\/?p=2743"},"modified":"2024-07-16T05:33:12","modified_gmt":"2024-07-16T12:33:12","slug":"pxp-pera-2024-webinar2-chat-summary","status":"publish","type":"post","link":"https:\/\/pxphub.org\/fr\/pxp-pera-2024-webinar2-chat-summary\/","title":{"rendered":"Chat Summary PERA Webinar 2 2024: Motivations for Being a Patient Partner in Research"},"content":{"rendered":"\r\n\r\n\t

On May 9, 2024, PxP and CIHR-IMHA Patient Engagement Research Ambassadors (PERA) co-hosted their 2nd webinar. This webinar focused on the motivations for being a patient partner in research, with speakers Anna Samson, Larry Funnell, and Therese Lane. The webinar was moderated by Kimberly Strain. This session, part of a disease-agnostic webinar series on patient engagement in health research, was designed for patient partners at all levels of expertise and other members of the research team. The discussion focused on patient engagement, diversifying research and addressing gaps within the patient partner community. Some of the chat discussion points have been condensed and shared below.<\/p>\r\n

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  1. People felt that education through things such as the CIHR-IMHA research modules provided them a good foundation to launch them into other training resources. They also discussed other places to find helpful information about health research and patient engagement opportunities<\/li>\r\n<\/ol>\r\n

    “I do find CBCN provide the best information regarding clinical trials available in Canada for example…I think few physicians are aware of CBCN {Canadian Breast Cancer Network] and so therefore a good deal of the public still unaware of their accessibility”<\/p>\r\n

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    1. People spoke about the need for diversity in research.<\/strong> Naming that research mainly “looked at white men” in conditions such as ankylosing spondylitis and spinal injuries. Discussing how this leads to issues such as “delays [in] diagnosis for women”. One participant commented that these exclusions of specific groups is “why it’s important [to have] diverse representation in research.”<\/li>\r\n<\/ol>\r\n

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      1. There was discussion around ways to get more men engaged in patient partnership in research. People named speaking at men’s groups, car shows, and providing food as some of the ways men could feel that patient engagement was doable for them. This discussion came following the speaker noting there was a gap in male participation in patient engagement.<\/strong><\/li>\r\n<\/ol>\r\n

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        1. People shared that the webinar was reaffirming<\/strong> and inspiring.<\/li>\r\n<\/ol>\r\n

          “Your experiences reassured me on my journey as a PWLE.” (PWLE: person with lived experience)<\/p><\/blockquote>\r\n

          Resources shared:<\/h2>\r\n