GRASP: Helping Advocates Understand Research, Helping Researchers Understand Patients

This podcast is made possible by Lilly.

Jamie DePolo:  The GRASP program -- Guiding Researchers and Advocates to Scientific Partnerships -- connects and empowers patient advocates, researchers, and clinicians to exchange ideas and learn from each other. At the 2022 San Antonio Breast Cancer Symposium, GRASP sponsored a reception, and we asked some patients and researchers what they had learned from the program.

Abigail Johnston: Hi. I'm Abigail Johnston and I have been living with metastatic breast cancer since 2017. I was honored to participate in the very first GRASP poster session in 2019 when it debuted in-person in San Antonio and then I've participated ever since virtually.

I have a database now of all the scientists, whether the poster authors or the clinicians, that I've called literally from my appointments with my medical oncologist to ask a basic science question. And every single time I learn a nugget that helps me understand the disease more and helps me understand my diagnosis more, as well as staying abreast of drugs that are coming, to be able to suggest to my doctors. I find that all of the clinicians and the scientists that participate in GRASP are true subject matter experts, meaning they can translate the most complicated things into the simplest of concepts, which helps me more fully understand what I'm going through, but then also to be able to help other people.

Debbie: Hello, my name is Debbie. I was diagnosed with triple-negative breast cancer in 2010. And after that, I was diagnosed with a BRCA1 mutation. I live actually in North Miami Beach, Florida, and I started volunteering with GRASP at the San Antonio Breast Cancer Symposium in 2019 when it was the first GRASP session. And I found that it was incredible. The interaction between the researchers and the clinicians and the patient advocates, that we all learn from each other. So, it was really very beneficial both for the poster author, they said, “Oh, I never thought about that,” and then the clinician is like, “I've learned so much today.” And for us also, just to be able to participate in clinical trials or research. So in the future, what we are thinking right now is to start a program, the same program, for Spanish speaking patients and also researchers in other countries to be able to build that community between researchers and patient advocates, and to continue the research and the collaboration between the different patients and researchers.

Jamie DePolo: I have to ask one question. I know you're in the planning stages right now for this Spanish version, what…what are your next steps? What…what's the time…is there a timeline for that?

Debbie: What we are thinking is to get some of the posters from the San Antonio Breast Cancer Symposium, and in a couple of months set up all the materials in Spanish and just train some researchers and advocates and run one test and then be able to implement these in future conferences. 

Judy Fitzgerald: Hi. I’m Judy Fitzgerald and I am a 14-year breast cancer survivor. I was diagnosed in 2009 with bilateral breast cancer. Both were HER2, uh, ER/PR positive, HER2 negative. And since my diagnosis, I was sort of obsessed with the idea of preventing breast cancer. And so I started Googling methods to prevent breast cancer and I stumbled upon an investigator at the Cleveland Clinic who actually had a preventive breast cancer vaccine and was looking to have advocates and to try to get support for the clinical trial.

Justin Johnson: Justin Johnson, I'm a researcher at Cleveland Clinic and I'm working on the breast cancer vaccine clinical trial.

Judy Fitzgerald: So, since that time, I've been an advocate for the Cleveland Clinic vaccine. I actually grew into a foundation called Sisters4Prevention and I have a website, www.sisters4prevention.com. I also have a podcast and a YouTube channel. And my passion is supporting the prevention of breast cancer through primary prevention, which means it never will happen in the first place.

We five years ago got a DoD grant to fund the phase one clinical trial of the primary prevention vaccine now being administered at the Cleveland Clinic.

So, I learned about GRASP this year before ASCO where as an advocate on the clinical trial for the breast cancer vaccine, our poster, Dr. Budd and Justin's poster, was chosen by GRASP to be presented to advocates. And so, I was the advocate that sort of moderated the poster presentation and that was when I first was introduced to GRASP. And since then, I've been sort of affiliated with them and also been attending their sessions. And I think it's very unique because it connects investigators with advocates, which is a big passion of mine. To find out how we can better serve the advocate community as a representative and speak for those that really can't speak for themselves. So, it's really a unique opportunity to really contribute or pay back those of us that are still here.

Justin Johnson: And I just wanted to say that we are very grateful for the advocate community. We have Judy and two other advocates that meet with us every other week, and are very involved with our research. And they serve as an inspiration to us, every time we speak with them, and I'm very thrilled to be standing here next to Judy today and meeting other advocates in person. This is wonderful.

Katie Edick: My name is Katie Edick, and I am from Michigan. And I was diagnosed with metastatic breast cancer de novo in 2016. So, I've been living with metastatic breast cancer for six years. And I actually met Julia and Christine at the Theresa’s Research Foundation conference and we really hit it off and had a lot of good conversation. And then they invited me when they started GRASP. And I went to the very first GRASP session and learned so much from the researchers, and it was really exciting to be able to ask them questions in real time that popped up in my brain and having a clinician there in a mentor there with the patient advocates. It was just a really great community and a safe space in order to ask the questions. And then the next year, Christine and Julia asked me if I would be a mentor and so then I mentored last year for some of the sessions. And that's really exciting because you kind of see the posters beforehand and can kind of even dive a little bit deeper into the research and ask some really great questions. And so, I'm just really excited to be a part of GRASP.

Traci Bethea: I'm Traci Bethea. I am an assistant professor of oncology at Georgetown Lombardi Comprehensive Cancer Center. I found GRASP on Twitter, and I was really excited about different opportunities to engage with patients and patient advocates.

I'm at a comprehensive cancer center so we have a community outreach and engagement core, but I was really interested in kind of more, kind of structured way of getting involved. And so, I did a kind of a test drive by volunteering to do virtual poster walkthroughs because it was during the pandemic and had a really great time breaking down the science and actually like engaging with patients. And I learned a lot about language. In my experience as an early-stage patient, thinking about language was very different for me. So, I try to disclose to patients when I'm doing a walkthrough or when I'm doing a huddle, I thought that huddles were amazing where I could talk about here my ideas, what do you think, what's useful. There are things I can get funded, there are things I can get published, but what's useful for patients, what’s useful for advocates and caregivers? And I feel like their insight has been awesome, and really helped me hone in on some of my research ideas, and also helped me build community in this awkward space of being a patient and a researcher.

Because you're always supposed to be in a box in a community, you're either in the community or you're not. And so I also feel like it's really a more welcoming space to be able to talk about that experience and talk about how it influences my research, my research questions without it being like, oh, my science is biased, as opposed to my science has been enriched. And also being able to connect with different patients and advocates and caregivers from some of the things we've gone through, different places, different times, different stages in life. But we've kind of seen…seen that side of it and talk about you know, how do you ask those questions or how do you share that information?

So, I found it super enriching. And I encourage other scientists, I send them links. I'm like, oh, you should do this. Because I think it's a very safe space to be a scientist if you don't speak the language for bench science or epidemiology, population science. So, I think it's a great opportunity. And I've also shared it with our comprehensive cancer center as kind of a model to follow to not just increase scientific literacy of patients to get them engaged in research, but to increase kind of the empathy and the wisdom of scientists, to see patients as people and to see their research as really being integral to society.