Why Should I Participate in Research?
By: Ivana Ristevski
If you have seen any of our social media posts asking you to participate in research you might be wondering “why do they want to hear from me?”. That is a really good question! Before I participated in my first research project, determining the Top 10 Retinoblastoma Research Priorities, I thought that the researchers and clinicians were the experts and I didn’t have anything more to offer. However, during the in person workshop where we were ranking the priorities, we were discussing which priorities were important and I saw that all the groups shared their thoughts and in turn listened attentively to the others as we discussed which priorities are important to us and why.
One of the examples from this experience where the voice of survivors made an impact to research was when a few survivors passionately persuaded the group that research on vision loss is very important to survivors and should be studied. They made sure this priority made it on the list.
If it wasn’t for the passion of parents and survivors sharing our stories and persuading the researchers and clinicians that the priorities we were passionate about need to be in the Top 10, the list would have looked a little different, not because researchers and clinicians do not find our priorities important but because they don’t have the lived experience and are sometimes not aware of the problems we faced and continue to face which we would like addressed by research. By including our voices we were able to enrich this experience and collaborate together and decide on a list of Top 10 that are important to all who are impacted by retinoblastoma, personally and professionally.
This was just one example of the impact of having your voice heard in research. I have encountered similar instances in other projects I have been involved in where the voices of parents and survivors help shape aspects of the research process to make it better. Below is an image of the research process and the steps required to execute a research study.
Your input, guided by your lived experience and personal skills, can help guide retinoblastoma research in any step of the research process but it can also enrich your life in the following ways:
- You can make a difference for RB patients & families by sharing your expertise to advance patient centred RB research and participate in RB research relevant to you and your family.
- Through our events and projects you will meet other RB survivors and families as well as build relationships with world renowned researchers and clinicians.
- You will have the opportunity to inform and influence the direction of RB research.
- You will improve your own knowledge of RB and receive the latest RB research findings.
- You can use your personal and professional skills to enhance RB research projects and the development of RB educational materials.
If you are interested in getting involved, I invite you to sign up to the Retinoblastoma Research Registry where you will receive a quarterly newsletter letting you know about news and event and inform you of research opportunities. You can click the Join the RB Registry button on the ribbon at the top of this web page or click here.