Redefining Research with Patient Engagement
It has been an exciting and invigorating year at the Transplant Research Foundation of BC (TRF). Our research portfolio continues to evolve as our partnerships become stronger, allowing for more diversity in the research we fund. 2019 was a robust year for our foundation, awarding $102,500 in direct research dollars to BC based scientists and clinicians. These researchers and health care professionals are working to improve the transplant landscape for recipients and their families through innovative and patient-centered projects.
We have also committed to better aligning the work we do with the principles of patient-oriented research (POR). Working closely with our partners at BC Support Unit, Vancouver Coastal Health and Providence Health Care, we have co-hosted training workshops and information sessions to build capacity in our community and grow our pool of trained patient partners. We are proud to introduce three of our dynamic and valued patient partners. Working collaboratively with researchers and clinicians, these individuals are ensuring the work being undertaken in various transplant related projects is relevant and meaningful and embraces the concept of POR.
Patient Partners Profiles
Larry Worfolk
Born with cystic fibrosis (CF) in 1958, Larry was one of the oldest CF patients in BC to undergo a double lung transplant at the age of 50. For Larry, his transplant has given him a new lease on life and motivated him to use his lifetime of experiential knowledge to benefit other patients and families.
Why do you want to be involved with research?
I want to be involved because I find research quite fascinating. So many creative minds are at work to help humankind, whether they be long-time researchers in the lab, or clinicians who come up with a brilliant idea after working hands-on with patients.
What has been your experience with research, including before and after you became a patient partner?
I have a lifetime of lived experience within many branches of the medical system. I participated for years as a research subject and yet, never had the results of those studies shared with me. Now, as a patient partner, that is changing with the advent of patient-oriented research, where the patient has a voice in what is of value to them.
What message do you have for other patients who are interested in becoming involved with patient-oriented research?
I would encourage anyone who is interested in becoming an actual partner in research to reach out and become involved in the Transplant Research Foundation of BC.
Nick Darcy Photos
Shelby Gielen
Two-time liver transplant recipient, Shelby, embraces every opportunity to help support patients and families navigating the complexities of the transplant journey. She credits her existence today to the many advances in transplant medicine over the years.
Why do you want to be involved with research?
I want to put my colourful and diverse 27 years of lived patient experience to work by making the path easier for patients who come after me.
What has been your experience with research, including before and after you became a patient partner?
It was discovered post-transplant that my donor liver was a carrier of Hepatitis B. Unfortunately, being immunosuppressed led me to develop the virus. As a result, I was deemed unfit for another transplant when my liver began to fail. I was 27 years old and told I had three months to live. With very little time, I was given the opportunity to be a part of a clinical trial that would prevent the active virus from transferring to a new liver. As a result of this development, I was eligible to receive a second transplant.
Since being involved as a patient partner I have been part of a number of grant review panels. I sit alongside scientists, physicians, administrators and healthcare stakeholders to review applications for funding.
What’s surprised you about being involved in research as a patient?
I was most surprised at how much fun this has been! My feedback has been welcomed and received with open minds. I’ve been happily surprised at how valued my perspective is and how my feedback is incorporated into current research projects. It’s incredible how equal a playing field it is when you enter into a great situation of patient-oriented research.
If you want to help others, or put your experience to use, get involved. Being a patient partner may not be what you think. It sounded very intimidating to me at first, but there’s a shift happening. Our perspective as the experts in lived experience is valuable and being actively pursued. Our help is needed to guide research, this is where we fit in, this is our role as patient partners. There’s training and support, and always someone to reach out to. It’s one of the most rewarding things I’ve ever done.
Earl Howell
Diagnosed with primary sclerosing cholangitis in 1982, Earl Howell’s liver disease led to a liver transplant in 1997. A champion for organ donation and patient advocacy, Earl volunteers with BC Transplant and is the local treasurer for the Canadian Transplant Association.
Why do you want to be involved with research?
I find what is going on in research these days very exciting. Research has the potential to improve so many aspects of our daily lives and for me, transplantation is an area where we are learning so much. This can improve our well-being and extend our lives. I wish to share my knowledge of transplantation – both the pre-transplant aspect and the amazing 22 years of post-transplant life – with the research community to help finds ways to enhance our quality of life, and ultimately make transplant a cure!
What has been your experience with research, including before and after you became a patient partner?
Prior to becoming a patient partner with TRF, I was part of the B.C. Generations project, a project that studied the impact of exercise on transplant recipients participating on the Gift of Life Dragon Boat Team. As a member of the Canadian Transplant Association, I have participated in several questionnaire type studies being conducted by university groups across the country.
More recently, I have assisted a researcher in setting up her project studying drug compliance protocols with kidney transplant patients. I am now anxiously awaiting the start up of the VCHRI awards season to have a role as a patient partner on grant reviews.
Why would you recommend becoming involved with research as a patient partner?
I believe all of us in the transplant community have received the greatest gift of all, the gift of life. We have survived many experiences as part of our transplant journey. Sharing our insight with the research community will most certainly benefit patients, of today and tomorrow. I have found my involvement in research very gratifying, and it is another means of honoring my donor. “Just do it” folks.
If you are a researcher or clinician wanting more information on POR or a patient and family member who is interested in become involved in research, get in touch with us! Email Kristi Coldwell at newlife@trfbc.org
