Author: Frances Argento
My name is Frances and I am a first year Master of Science student at the University of Toronto. Under the mentorship of Dr. Helen Dimaras I am conducting research at the Hospital for Sick Children (SickKids) in the Department of Ophthalmology and Vison Sciences. My research falls at the intersection of patient engagement and biobanking.
What is a Biobank?
A biobank is like a library, except instead of storing books, it holds samples of human tissue. This may include blood, tumors or fluid, as well as health information and medical images. Information in the biobank can be “borrowed” by scientists from all over the world to help them conduct research. At SickKids, there is a biobank dedicated to rare childhood eye cancers, also known as the Rare Pediatric Eye Cancer Biobank or “R-PEC Biobank”. The R-PEC Biobank collects high quality data on childhood eye cancers and shares this information to promote future research on things like child vision and eye health.
What is Patient Engagement
The Canadian Institute of Health Research (CIHR) defines patient engagement as the “meaningful and active collaboration in governance, priority setting, conducting research and knowledge participation”. When patients are meaningfully engaged in research, it can positively promote both the quality and impact of research being produced! It is also important to note that the term patient widely refers to anyone with lived experience of disease, including informal care givers, family and friends.
Patient Engagement in the R-PEC Biobank
One important way patients are involved in the R-PEC Biobank is through the Patient Advocate Committee (PAC). The PAC is a group of patient partners in research who use their lived experience to help empower scientific advancements.
A significant part of my research experience has been working with patient partners to help develop the PAC. To date, there are five patient partners on the PAC, all with lived experience of retinoblastoma. The PAC meets online monthly to conduct research and collaborate on projects.
The first step of the PAC was to develop a patient engagement plan. Through patient partner-oriented discussions, we established the PAC’s research priorities and goals. One of the first tasks the PAC decided to work on was recruiting more patient partners. As a result, the PAC created a “Patient Advocate Committee Information Guide” to effectively recruit new members and communicate the importance of patient partnership in research. The PAC is also in the process of creating a consent “tool” to enhance informed consent discussions for the R-PEC Biobank donors and their families.
Future Steps and Rb Community Impact
It is exciting to see everything that the PAC has accomplished over the past 6 months, and I look forward to working more with this team to continue its work. A future evaluation of patient engagement in the R-PEC Biobank and PAC is also planned to understand exactly which practices have the greatest positive impact on the R-PEC Biobank. Overall, the results from this experience promise to provide a framework for establishing meaningful patient partnership in biobanking and contribute positively to the field of rare eye cancer research.
If you have questions about the R-PEC Biobank, please email retinoblastoma.research@sickkids.ca