{"id":13686,"date":"2021-10-28T10:20:57","date_gmt":"2021-10-28T15:20:57","guid":{"rendered":"https:\/\/cdtrp.ca\/en\/?post_type=spucpt&p=13686"},"modified":"2021-10-28T12:21:36","modified_gmt":"2021-10-28T17:21:36","slug":"improving-engagement-and-empowering-patients-on-their-transplant-journey","status":"publish","type":"spucpt","link":"https:\/\/cdtrp.ca\/en\/spucpt\/improving-engagement-and-empowering-patients-on-their-transplant-journey\/","title":{"rendered":"Improving Engagement and Empowering Patients on Their Transplant Journey"},"content":{"rendered":"

Improving Engagement and Empowering Patients on Their Transplant Journey<\/strong><\/h4>\n

Navigating the\u00a0<\/span>organ donation and transplantation\u00a0<\/span>(ODT)\u00a0<\/span>system in Canada can be complex and confusing for people on a transplant journey.\u00a0 This qualitative study embraces the power of lived experience to guide and inform a truly patient-driven project in which research priorities have been defined by patients,\u00a0<\/span>families<\/span>\u00a0and donors.<\/span>\u00a0 The online survey and focus groups\u00a0<\/span>central to the project\u00a0<\/span>were co-designed with patient research partners using an extensive iterative approach.<\/span>\u00a0 Engaging patients from across Canada at every step of the research process is yielding a better understanding of the lived experiences of those on a transplant journey and will be instrumental in developing patient-led and patient-focused recommendations for long term improvements to the\u00a0<\/span>ODT system.<\/span><\/span>\u00a0<\/span><\/em><\/p>\n

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Carrie Thibodeau’s bio<\/span><\/span><\/strong><\/h5>\n

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Carrie Thibodeau is <\/span>serving as<\/span>\u00a0project lead for a qualitative study called\u00a0<\/span><\/span>Improving Engagement and EmpoweringPatients\u00a0<\/span>on<\/span>\u00a0their Transplant Journey<\/span><\/span>. <\/span>Her<\/span>\u00a0educational background\u00a0<\/span>is\u00a0<\/span>in\u00a0<\/span>the fields of <\/span>applied<\/span><\/span>\u00a0health<\/span><\/span>\u00a0sciences and communications<\/span>, and the focus of\u00a0<\/span>her\u00a0<\/span>professional career\u00a0<\/span>has been on kidney health.<\/span><\/span><\/p>\n

She has work<\/span>ed<\/span>\u00a0closely with both patients and medical professionals<\/span>\u00a0for many years<\/span>,<\/span>\u00a0and she has collaborated\u00a0<\/span>on multiple projects\u00a0<\/span>with\u00a0<\/span>the Kidney Foundation of Canada.<\/span> On a personal\u00a0<\/span>level<\/span>,\u00a0<\/span>Carrie has a close family connection to the renal\u00a0<\/span>and transplant communities. Her youngest <\/span>uncle\u00a0<\/span>(<\/span>and de facto big brother<\/span>)<\/span>\u00a0<\/span>is a three-time kidney transplant recipient\u00a0<\/span>and<\/span>\u00a0is now undergoing hemodialysis<\/span>. H<\/span>is experiences have had a profound impact<\/span> on Carrie both personally and professionally. T<\/span>his project\u00a0<\/span>has been<\/span>\u00a0an opportunity\u00a0<\/span>to be part of a team responsible for\u00a0<\/span>ensur<\/span>ing<\/span>\u00a0that patients’\u00a0<\/span>lived\u00a0<\/span>experiences<\/span>\u00a0<\/span>are\u00a0<\/span>central to the decisions being made about how best to manage organ donation and transplantation in Canada.<\/span>\u00a0<\/span><\/span>\u00a0<\/span><\/p>\n

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Kristi Coldwell’s bio<\/span><\/span><\/strong><\/h5>\n

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Kristi Coldwell is the Senior Advisor for Transplant Research Ad<\/span><\/span>vocacy at the Transplant Research Foundation of BC. Having undergone a he<\/span><\/span>art transplant as a teenager due to congenital heart\u00a0disease,\u202fKristi\u202fis acutely aware of the role research plays in improving outcomes and enhancing quality of life. She believes Patient and Family Partners have an important role in shaping and informing research to ensure it is meaningful a<\/span><\/span>nd accountable to all stakeholders<\/span><\/span>.\u202f\u00a0<\/span><\/span>She also serves as the co-chair for the Patient Advocate Advisory Committee of the Organ Donation and Transplant (ODT) Collaborative, a Health Canada initiative that brings together key stakeholders in Canada\u2019s ODT system.<\/span><\/span>\u00a0<\/span><\/p>\n","protected":false},"author":6,"template":"","class_list":["post-13686","spucpt","type-spucpt","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/spucpt\/13686"}],"collection":[{"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/spucpt"}],"about":[{"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/types\/spucpt"}],"author":[{"embeddable":true,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/users\/6"}],"wp:attachment":[{"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/media?parent=13686"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}