The CDTRP 2021 Patient, Family and Donor Research Forum was a collaborative success
This CDTRP’s virtual 2021 Research Forum was a huge success: it provided an excellent opportunity to inform and advance collaborations between investigators and patients, family, and donors as active contributors to the success of various projects. About 190 participants from six different countries registered for this Forum.
The objectives of this Research Forum were three-fold:
- To showcase the work of senior and junior researchers that has evolved with the addition of a patient, family, donor perspective.
- To help senior and junior researchers who are seeking live feedback on their work from patients, families, or donors.
- To support patients, families, and donors to develop PFD-led research projects or ideas of how PFDs can be included in ongoing transplant and donation initiatives.
Highlights from presentations and panel discussions
The morning of the Forum’s first day centered on discussions related to families and caregivers. Some mentioned the benefits that can occur with patient engagement in research projects:
- Improves patient and health system outcomes
- Improves quality of care
- Improves the quality and relevance of research
- Provides new ideas not previously considered
- Facilitates the recruitment and dissemination of results
- Promotes the transfer of knowledge and the translation of research results into practice
- Empowers patients, families, and donors
Afterwards, participants learned about the vast social and economic impacts of caregiving, an overview of resources available to support them, and a discussion of current knowledge gaps in caregiving policy and research.
The afternoon of the Forum’s first day focused on transplant patients. First, how organs can be better utilized in Canada was explained, followed by how PFDs can be engaged at the World Transplant Games. Next, discussions ensued examining how to improve engagement and empower patients on their transplant journey and how PFDs are being engaged in the development of recommendations to improve the organ donation and transplantation system throughout Canada.
On Day 2, the morning concentrated on living organ donation and education. After hearing a moving living organ donation story telling us what living donation means for the recipient, their family, and the donor, participants then heard about how school children are being taught about organ donation in Alberta and in Ontario.
For the afternoon of Day 2, the theme was engaging PFDs in research. The patient-focused website www.mykidneysmyhealth.com was explained, which was created for kidney patients by fellow patients. Lastly, participants heard from three Indigenous perspectives on their patient-oriented research journey and how to build cultural competency.
If you missed attending some of this Research Forum, recordings of each day’s sections will be posted soon on the CDTRP website.
To help us improve participation and satisfaction with our events, we would appreciate if you could please take a few minutes to complete our Forum’s survey below.
Thanks to our supporters
The CDTRP wants to sincerely thank these sponsors, for promoting the event and helping CDTRP ensure the Forum attracted participants from to coast-to-coast and internationally:
Special thanks also to the Forum planning committee:
- Chairs Linda Powell (caregiver to a waitlisted patient) and Larry Worfolk (lung transplant recipient);
- Sarah Middleton (non-directed living donor), Joanna Mitchell (caregiver to a pediatric heart transplant recipient), Sarah Douglas (ODTC – Health Canada) and Dr. Rahul Mainra (Canadian Society of Transplantation).