Author: Ivana Ristevski

The Retinoblastoma Research and You! booklet was co-developed by patients, health professionals, and researchers as a tool to educate and recruit Canadian retinoblastoma families to CRRAB. Through several Regional Working Group meetings, members oversaw all tasks associated with booklet development from choosing the key points and topics included, to deciding the flow of information, to creating designs and diagrams. The input and collaboration of many CRRAB members resulted in the creation of the final booklet currently available.

A key component to the booklet development process was the utilization of two virtual workshops in which patients, health professionals and researchers worked with a graphic designer to discuss design elements, finalize diagrams, and collaboratively design the featured pages of the booklet.

One of our workshop participants used his professional expertise and suggested the use of a QR Code so the booklet reader would have a quick way of connecting with CRRAB. This input led to having the QR Code inserted on the back of the booklet to help connect the reader to a feedback survey for the booklet as well as various resources on how to become a patient partner in research. Check out the back of the booklet to see for yourself!

Participants at the workshop also offered feedback and suggestions on our media toolkit which has been sent to various organizations who have a connection to retinoblastoma. This toolkit makes sharing information about the Retinoblastoma Research and You! booklet convenient for these organizations. Some workshop participants initially connected us with organizations who can use the media toolkit to share information about the booklet to reach a wider audience and find those affected by retinoblastoma who we may not have already reached.

By creating this booklet in a virtual workshop setting we were able to receive feedback from patients with various experience who not only brought their lived experience of retinoblastoma but also their personal and professional skills.

Read more about the Retinoblastoma Research and You! booklet here.

If you are interested in participating in a Regional Working Group, you can attend our next meeting. Email us for details: retinoblastoma.research@sickkids.ca.