When I talk about my experience with Wilmot. It is that of a community member. I am not a researcher and I don’t have a PHD. I will only share with you my thoughts. I will include a link that explain it more detail and from the people who know it best, Wilmot staff.
So many myths about clinical trials. It must be difficult to make a decision on whether you should or should not. I will never assume what a person goes through. I can’t! I haven’t had to face that very difficult decision. But from talking to people in the community and researchers at Wilmot, there are many myths that still exist around a clinical trial.
- Do I get a placebo
- Does that mean there is no hope
- Is it always another pill or IV running through your body
- Are they telling me the truth
What I have learned in the last year is that they are just that, a myth. That was way before I was around, some of that did exist.
So what is different today? I sit on a Protocol and Review Monitoring team. I don’t vote on clinical trials because I am not a researcher but am there to represent the voice of the community on access to the trials, underrepresented populations, and the process for the approval before it goes to another Internal Review Board.
All in all, I must admit I was intimidated by being on a team with Scientists, research teams that in most cases I had to look up different terms to understand. They are willing to explain when asked. What I am most grateful for is the understanding of the process a clinical trial has to go through before it can become a trial.
I am thankful to Wilmot for asking me to be part of something that allows me an inside look at something so important to not only the patient but for those that will benefit in the future from the trial.
https://www.urmc.rochester.edu/cancer-institute/research/clinical-trials.aspx