Give me a little sense of really what does research advocacy mean for the lay person? What kinds of activities are you pursuing to advocate for research? [4:35]
Oftentimes patient advocates are asked to review research protocols, research grants, and that’s some of the type of work that an advocate will get involved in initially. So we would be involved with reading your abstract, giving you the patient perspective on the abstract… I’ve taken it a little bit further than that, because what I found was as patient advocates, we are going to scientific and medical conferences. What I’m finding is, is that we don’t understand what’s going on in the sessions. And we don’t understand what we’re reading when we go to poster sessions on particular research. And so what I’ve been able to do over the last two years at the University of Illinois Cancer Center is, I’ve been working with MD PhD students. And they help me to take the research and break it down into easy to understand language. So when a patient advocate actually goes to a conference, they understand a scientific poster after reading and participating with my modules.
On why its important that patient advocates truly understand the research: [10:40]
I can say that with more meaning, because I actually understand what that research is. I’m not just going in there sharing my story of how I went through treatment and the impact has had on my life. And wouldn’t it be great if you could give us some more money for cancer research, but I can literally say, this is why we need the money. We need the money because we’re eight years away from a vaccine. We don’t have a diagnostic test or a screening device for ovarian cancer. We’re looking, we think we’re on the edge when it relates to PARP inhibitors. These are the types of, if you understand a little bit more about the research, it gives us a little bit more currency when we’re on the Hill talking to lawmakers about why it’s important, the story matters, but more intelligence about the research matters as well.
If you were to sit in front of CRS or sponsors right now who are struggling with patient recruitment for some of their trials, how would you tell them they could get this conversation started with communities? [22:35]
I think that it’s convenient at times to go through our hospitals, sometimes even our black churches. When I hesitate to say that those are not the strategies to get to the person living in the community, doing their thing every day. It’s time to really think about how every individual family understands clinical trials, particularly because of COVID. So does that mean a written communication, a flyer, a letter…using city council people who have monthly meetings within their own wards.
Send a representative to speak to that group. It’s ways to get down to the grassroots levels. Sure, you can do that at churches as well. It’s a little antiquated. I mean, it has a very political strategy to it. There may not be taken as well, but to give each one of those SRO or sponsors the opportunity to hear back, hear what people have to say and clear up some of these misconceptions about mistrust or fear, or we don’t want to participate. We don’t want to be a Guinea pig. I think it’s not going to be as uncomfortable as I think people are perceiving it to be.
One of the things that we’ve seen happened in the last year is more and more clinical trials are now being run on a hybrid or decentralized basis. So literally the clinical trials are coming to the patients instead of vice versa. Do you think that that helps? And if so, how would it help to enhance diversity within the trials? [34:45]
I often have had this conversation simply by saying, if you can get someone to participate in a clinical trial in their home. Kudos. Right? But if you can help some of these community-based health clinics and some of these underfunded safety net hospitals to be sites for clinical trials, that to me makes so much common sense. I know it’s a market and I know it’s competitive but just imagine for a moment, if a clinical trial site for diabetes was in a safety net hospital in a Latino community. Where the staff has been retrained, the physicians there have been retrained to actually monitor and conduct clinical trials. Right there at a hospital that population of people trust are being seen as patients. To me that’s just a no-brainer. I don’t see why it can’t happen.
What are the three pieces of advice you would give to others on how to improve clinical trials? [40:20]
Before even coming to the table with those three things we need to find out, do you want to come? The first step is to listen. The second step is to share, so that other people could learn. So there’s that bi-directional approach you talking about. Right? You listen to me, you hear what I have to say. I listened to you, but you have to tell it to me and easy to understand language. Right? And then together, we come up with a strategy where it’s going to work for everybody and it’s going to make everybody comfortable.