Author: Ivana Ristevski

I have been part of the Retinoblastoma Research team for 5 years now and in that time, I have had the opportunity to help with several projects and be a co-lead for the Canadian Retinoblastoma Research Advisory Board (CRRAB) where I helped co-host several meetings, workshops, and events. During this time, I learned that while all our journeys are different, we all want to help make the journey for the next generation easier and it is a bonus that we get to do it while working together! When I say working “together” I am thinking of the parents who attend meetings to connect with other families and learn from the health professionals, the survivors who are curious to find other survivors and exchange experiences, and the health professionals who attentively listen to stories of those with lived experience and incorporate change in their practice.

While each project I have worked on has been different, the one consistency has been personal growth. For myself, each experience has taught me a new skill including preparing for and leading workshops, setting up a website, event planning, and product design. But I am not the only one learning. Several projects have offered participants an opportunity to stretch their creative muscles. For example, a young CRRAB member stood in front of a workshop group and helped design stickers for the Retinoblastoma Journey Map whereas another member learned to use PowerPoint to create slides for a Cup of Tea presentation.

While I appreciate the newly developed skills I have learned, my greatest appreciation has always been the ability to learn about retinoblastoma from people with lived and professional experience in a comfortable setting where I could ask questions and discuss topics that I wanted to better understand. While I have personally benefitted, this has also resulted in my son learning more about retinoblastoma to the point where he can now advocate for himself in the future.

In turn, I also enjoy sharing my experience with my research team not only to help add the human element to research but also to add a human element to retinoblastoma. By offering my story to research students and colleagues, I hope that they start to see that a patient is not just a child with retinoblastoma but as someone who may have just had a long journey to get to their appointment, who may be feeling side effects of treatment, a family member that has gone through this journey together with their child, sibling, cousin, etc., and therefore, all have been affected in some way. Each patient has a unique journey and when the various experiences are incorporated, the quality of research will be more holistic.

Patient engagement in research has made significant impacts on retinoblastoma research. A few highlights include:

• By sharing their lived experience, a patient partner garnered support to include the need for more research on vision loss in the Top 10 Retinoblastoma Research Priorities.
• A survivor, using their professional experience, recommended using a QR code in the Retinoblastoma Research and You! booklet for easier access to online information.
• A young survivor shared that the first time they met other children with retinoblastoma was a major event that contributed to their overall wellbeing during a workshop which resulted in a sticker for the Retinoblastoma Journey Map to celebrate “finding community”.
• Working group members selected one of the Top 10 Retinoblastoma Research Priorities to create a study to address it. Individuals looked for funding opportunities, created demographic surveys, and reviewed questionnaires to create the study. Members of the group with lived experience made sure the questionnaires incorporated all aspects of the retinoblastoma journey.
• Patient partners also help support CRRAB by volunteering for the social media team, creating and maintaining the website, and writing blog posts.

There are many more examples of the amazing work that patient partners bring to a research project. However, as part of the research team, I have also seen the challenges that come with patient engagement such as: (i) funding priorities often do not support things like travel and compensation; (ii) working across many time zones in Canada makes it difficult to find a good time for meetings for all participants; (iii) general burnout from many responsibilities of our participants results in low turnout at some meetings and events.

As a result, your voice is needed! Without a wide variety of views and experiences research may not be able to reach all members of the retinoblastoma community and create solutions to care for all.

If you are interested in participating but are not sure how or just want to know more, send me an email and I would love to talk to you about your experience and interests so I can help you find the right fit with CRRAB and retinoblastoma research.

You can also learn more from our Retinoblastoma Research and You! booklet and by attending one of our upcoming events. In order to stay up to date on all opportunities and events, make sure to join the Retinoblastoma Research Community.