After launching in the fall of last year, the A.C.T.I.O.N. project is nearing the completion of year one, focusing on the engagement of patients and community members to gain feedback on their overall healthcare experience and experiences specifically related to living donor kidney transplantation (LDKT).
COVID-19 is disproportionately affecting racialized communities in Canada and the U.S., exacerbating health equity issues that have gone unaddressed for far too long. The work of the A.C.T.I.O.N. project feels especially significant in this context.
A.C.T.I.O.N. is a community driven project, and engagement with the Ontario ACB community is built into every phase of the project. On May 29, the Ontario division of the project held their first town hall meeting to check back with community and make sure that the findings from year one of the project were representative and accurate. The meeting was held virtually and was attended by community members that had participated in interviews and focus groups, as well as local members of the Community Advisory Committee including the Black Health Alliance.
Lydia-Joi Marshall, research associate and community engagement specialist for A.C.T.I.O.N. explored emerging themes of the project and facilitated discussion around these themes, which include (among others) mistrust of the medical system, lack of representation, and personal beliefs about organ donation, such as leaving the body “intact.”
While the virtual format was required due to the global pandemic, it did not hinder discussion; the presentation of each emerging theme was followed by a lively dialogue which provided further insight into A.C.T.I.O.N.’s findings so far.
Finally, attendees were asked whether or not they felt comfortable with these themes being shared with our National Project Partner’s Committee the following week. With their approval, we were able to present these findings to the national project partners on June 2 nd.
Town halls will be held regularly throughout the project to ensure community involvement and sign off every step of the way.