With a movement towards greater patient engagement in Canadian research, it has become even more important to involve our transplant community in the research we fund. One key way we endeavour to do this is by sharing updates on our funded projects with our community at our annual Celebrate Transplant Research event. This September marked our second year holding the event and featured enlightening presentations by leaders in the field.
Dr. Kathryn Armstrong opened with her discussion “Lets Talk Teenage Transplant”: Using Text Messaging to Engage with Adolescent Solid Organ Transplant Patients, her winning 2018 Venture Grant project. Adolescent transplant patients are a unique cohort with distinct needs when it comes to treatment compliance and medication adherence. Armstrong seeks to establish dialogue outside clinic visits with this population via a text messaging service. By strengthening the relationship an adolescent has with their health care team, through a platform that resonates with this population, it is hoped teens will be better supported during this critical and vulnerable period of development.
It was noted that in the last decade, 10% of cardiac, 8% of renal and 3% of liver adolescent recipients have lost their graft or died, in part due to non-adherence.
Social science projects like this are crucial to help address the larger picture when it comes to the daily needs of transplant patients.
It was encouraging to hear from Dr. John Gill on his project, Integrating registration for organ donation into routine health care encounters. Gill was the recipient of the 2015 Venture Grant for this project that examines best practices for broaching organ donation in the health care setting. Gill’s project highlights what the Venture Grant program is all about – funding innovative ideas that evolve to bigger and more dynamic projects. Thanks to his initial Venture Grant funding, Gill has gone on to receive $1.7 million dollars from the CIHR to develop this concept throughout BC hospitals.
We also heard from Aggie Black, Director of Health Services & Clinical Research and Knowledge Translation at Providence Health Care. Aggie spoke to the unique and dynamic partnership TRF has with Providence Health Care and Vancouver Coastal Health for their Research Challenge Programs. Since the partnership was created in 2016, TRF has funded five patient-focused micro grants related to transplant. This partnership has enabled TRF to grow and reach clinicians involved in the direct, daily care of recipients. These health care professionals have invaluable insight into the lived experiences of patients. They bring forth research questions that matter to patients and impact practice delivery.
We were fortunate to have Wynne Chiu, Patient and Nurse Educator at St. Paul’s Heart Transplant Program, share her team’s emerging findings from their 2017 Research Challenge project, How do highly sensitized patients describe their experience with being on the heart transplant waitlist. With recipients living longer and re-transplantation becoming a more common practice, Chiu aims to better understand how these patients can be better supported in their complex journeys.
Our evening ended on a high note, with heart transplant recipient Jack Palmer reminding us all why we do what we do – organ donation works and transplant research matters! Born with a complex congenital heart defect, Jack underwent a transplant when he was just 7 weeks old. Today Jack is thriving and preparing to celebrate his 20th birthday. Jack acknowledged transplant life is not without its challenges but chose to focus on the gratitude he feels for being alive. Jack closed our evening with words that could not be more appropriate for our event “Thank you to all the researchers, people who fund the research, and everyone who works to make things better for people like me. I just really thank you for what you do.” We couldn’t agree more.
Thank you to everyone who attended our event!