GRASP connects advocates and experts at 2020 ASCO Annual Meeting

Large medical conferences like the annual meeting of the American Society of Clinical Oncology provide opportunities for patient advocates to interact with doctors and researchers. But doctors are still the main audience at these conferences, and the content can be hard to understand for anyone without a medical degree.

Guiding Researchers and Advocates to Scientific Partnerships, known as GRASP, is a program created by Julia Maues and Christine Hodgdon, two alumnae of LBBC’s Hear My Voice advocacy training. GRASP makes research more accessible for patient advocates by putting them in conversation with experts, and fostering a sense of urgency and purpose for researchers by connecting them directly to the people they are trying to serve.

LBBC writer Eric Fitzsimmons spoke to participants in a virtual GRASP walkthrough held during the 2020 ASCO Annual Meeting. The discussion features patient advocates Jamil Rivers, Dionna Koval, and Shelley Fuld Nasso, as well as oncologist Philippe Aftimos, MD, of the Institut Jules Bordet in Belgium. Watch, listen, or read the transcript below.

Eric Fitzsimmons:

Hi, everyone, thanks for tuning in. I'm Eric Fitzsimmons, writer for, Living Beyond Breast Cancer. We've been covering the ASCO Annual Meeting, which like many events this year, has moved to a virtual platform. Today I'm speaking with patient advocates, Jamil Rivers, Shelly Fuld Nasso, Dionna Koval, and Dr. Philippe Aftimos. They have just participated in GRASP, a program created by Julia Maues and Christine Hodgdon, two alumni of LBBC Hear My Voice advocacy training. GRASP has two goals: to make scientific research more accessible by bringing advocates and experts together and to give researchers opportunities to connect directly with people they are trying to serve to better help foster a sense of urgency and purpose to their research. GRASP was introduced at the 2019 San Antonio Breast Cancer Symposium and like everything else pivoted to a full virtual platform for this year's ASCO because of COVID-19. Thanks everyone for joining me. I want to start with the Julia and Christine and talk a bit about what GRASP is. So what does GRASP stand for?

Christine Hodgdon:

GRASP stands for Guiding Researchers and Advocates to Scientific Partnerships.

Eric Fitzsimmons:

And what made you guys start this program?

Christine Hodgdon:

It actually started last year at ASCO. I was just walking through the poster sessions with another cancer researcher and together we went through and reviewed posters and I learned a lot from her and she learned a lot from me. We tweeted about it and people thought that there was an actual program that they could sign up for, for closer walkthroughs. They were asking "Where do I sign up?" We said, well, there is no program. Then we thought that maybe there should be, so Julia and I worked all summer to pilot the program at last year’s San Antonio Breast Cancer Symposium.

Eric Fitzsimmons:

It's wonderful that you've found that connection with people and that people were so excited for it.

Eric Fitzsimmons:

How big of an adjustment, especially having just found your format for it, was it to switch to the virtual for this ASCO?

Julia Maues:

It's been quite an adjustment because GRASP is really about the connections that are created between patients and scientists. It's much harder, as we're all seeing, to make those connections via a screen. At the same time, it allows us to reach people that wouldn't have gone to the meeting. It allows us to have this sort of discussion at other times because we know that science happens [all the] time, and scientists can be interacting with advocates when they're having an idea or when they are having questions, instead of just a couple of times a year when the big cancer meetings happen.

Eric Fitzsimmons:

Fantastic. Thanks for sharing. Let's take a moment and turn to some of the participants who just went through the GRASP program, Jamil, Dionna, Shelley, what has it been like to attend the conference virtual this year? How have you found it?

Dionna Koval:

Well, I liked it, it felt more personable, to me, where I was with Dr. Philippe and I felt like it was more one-on-one than it would have been at a conference.

Jamil Rivers:

Yeah, I definitely agree. I have attended some of the large conferences and it can be overwhelming sometimes with all the various people. And then you're trying to really focus your attention on the researcher and having that conversation back and forth, and it can also be a little loud when you're in those environments. I thought that this one was nice because it was almost like a virtual chat, and we had that time to ask whatever we wanted and really engage so we could really understand the concepts behind the research.

Shelly Fuld Nasso:

And I'll just add that I was, I reviewed the posters before our discussion and I was a little overwhelmed by them because they were so technical. I kind of focus a lot of my attention, when I’m at ASCO or other meetings, on some of the health services research, and, this was like very deep in the weeds on the science. I thought, I'm not going to understand this, but having this discussion, Philippe did a great job of explaining it and really putting the context around it that isn't necessarily in the poster and helped us to have a discussion about these and how this research can eventually be put into practice as we continue to learn more about how to use liquid biopsies and the other topics that we talked about. I thought it was incredibly helpful to get that background that I wouldn't have gotten just reading the poster myself, so I appreciated that.

Eric Fitzsimmons:

Great and Shelly you've brought us into the next topic I wanted to get into: how much does a program like GRASP, how do you think it enriched your experience this year, as opposed to, if you've participated before, if you just had to view the science without the context you've gotten in this program?

Jamil Rivers:

I think the virtual setting, like I said, it kind of gives you that opportunity to really home in on the concepts of the individual posters. Then having that close opportunity to ask those questions one-on-one versus feeling compressed for time in a very compressed setting with so much going on. That conversational style was helpful to really think about my own personal experience living with MBC and how this research can move forward or impact my treatment.

Dionna Koval:

I agree with Jamil, it brought up feelings inside because living with MBC is so … it's a way of life and to learn different things that are happening right now, different studies, and to be able to connect with the first poster that we discussed and knowing that there are different things to do now with the liquid biopsies I never even knew about. I was grateful to be able to be part of this and learn more and be able to ask him questions. It was very helpful.

Eric Fitzsimmons:

Do you think having this walk-through with these specific presentations will help you to understand other presentations and other studies as you become more familiar with the terms and the way they are presented?

Dionna Koval:

Yes. I feel like it would. I feel like the terms that he used today helped me understand more. So, I think for future reference, it would be beneficial for us.

Eric Fitzsimmons:

Dr. Aftimos I want to bring you into the discussion as well. What does it add to your experience to work with and hear questions directly from advocates in this kind of setting?

Philippe Aftimos:

This is my second GRASP experience and I'll definitely sign up for a third or a fourth time. It's enriching for everybody. I think it's an educational experience for the patients, the advocates, and the scientists.

We should never forget that all the science that's being done, the grants being written, the studies being performed, they have one goal: to improve the care of patients. So it's important to have the patients and the patient advocates learn about the results. They are not just providers of samples and data. When you have them at meetings — and even for scientists that are sub-specialized, when you learn about the research of other people in other settings, you will not understand, even though you have the training for that — so it must be very difficult for the patient advocates. And for us, it's giving back, but also learning.

I think it's Jamil had said that how I explain the terms I use made her understand, but actually I learned a couple of ways to speak better with my patients starting tomorrow at the clinic. I think it was Julia or Jamil. I usually try to draw when my point is getting to the patient. Now I even have learned some words I can use.

I think that the platforms we have to present the data are not optimal. You know when you have the clinical trials that are done, you have to post the results on clinicaltrials.gov. But when you look at the data there, even as a scientist, I didn't really get it, because people just do it because they have to. And for me, it's important to show what you, what we did with the samples, to the patients that donated those samples.

And for us, we are writing the objectives of the research, we are creating the endpoints, but we think that this is what the patients want, but actually it's quite surprising to really hear what they want. And it's enriching for us to do better research in the future when you really know the needs.

Eric Fitzsimmons:

Great. That's really helpful to hear and understand that.

Christine Hodgdon:

I just want to say one thing about Dr. Aftimos, Philippe. He was amazing at San Antonio and we were afraid that we were going to be like pulling teeth to get researchers and clinicians to actually sign up, and he volunteered right away.

Even at the end of the session, he's running back to his backpack and Julia and I were like, "We know you have to go, thank you so much!"

He's like, "No, no, I have to go get, I'm going to do more posters. We want to go review a few more before the session ends.”

Then Julia and I were like, that's just amazing. So he's really very patient focused, and as advocates, we appreciate that so much. Thank you, Philippe, for all you do.

Philippe Aftimos:

Thank you, Christine.

Eric Fitzsimmons:

That's wonderful to hear your interest in it. And to have patients and other people understand that the communication barrier, sometimes it's been on both sides and everyone's trying to understand better how they breach that connection. Do you feel like you're missing anything from the in-person experience? The kind of serendipity of running into people sitting next to advocates, pharma reps, anybody in the just atmosphere of an in-person conference?

Philippe Aftimos:

I think that's my third virtual meeting this year. I guess I prefer in-person meetings where, for what I do for my job. When you're in your country attending a conference, you're not just going to empty your agenda and say that I'm just going to focus on the conference. So you were working full time and just attending the conference, we miss a lot.

When you travel to Chicago for ASCO, for example, we know we're there. We have nothing else. And we focus on what we're doing.

But for the GRASP sessions, I will say the same thing as everybody said, I appreciated the virtual experience. Because when you're at a poster session, you have people just pushing you around, people thinking pictures, people interrupting you, a lot of noise, maybe that's why we took more time last time.

In the hour we did today, it was really dense. We discussed the data of the poster, but we were able, and I hope the advocates can confirm that we're able, to discuss further and discuss concepts and future perspectives. And I think we managed to do that because it was a calm environment. It was a controlled environment. It was a more face-to-face.

Julia Maues:

Do you miss the presenter of the poster? We didn't even include them at all with some of their posters, having the video and things like that. But it's something we considered. Do you think that extra person should be invited?

Philippe Aftimos:

I'm not sure. It depends on the poster. When someone's working on a research concept and then from conference to conference, you have updates and real data. I think this can be important, but I'm not sure that we miss the presenter of the poster every time. I think here, more than the data of the poster, we discussed these different concepts. And for me, this was more important than actually the first poster. At the end, the conclusion was, this is hypothesis generating for the future. Meaning that in the clinic we can't use this information. So what we did is put it into perspective how, in the future, this will be important. And I'm not sure that a poster presenter that's focused on his own research will be able to provide you with that.

Eric Fitzsimmons:

I know from speaking to other advocates, that the connection is an important part of conferences for them. I want to ask some of you patient advocates as well, have you been able to find ways to converse and connect? Obviously this program is a big part of that, but through social media or any other ways that you've been finding to connect and discuss the findings from this year?

Jamil Rivers:

I think the great thing about this year is because it's so accessible, you can take the time to go through all of the content on your own time. And then, if you do have that opportunity to converse with the researcher and share your thoughts, you have that time to really think about  — well, me personally, living with MBC, I'm thinking about my own personal situation and what could be the implications in the future and what does this mean? Even as an advocate involved with research, what are the different things that we should continue to push for and advocate for? It really gives you time to comprehend all of the concepts instead of feeling like you're in a rushed pressure cooker, trying to think of everything and process everything in a certain amount of time. So it's been really helpful to have that time and flexibility to process all the information.

Dionna Koval:

I totally agree with her. To me, it's easier virtually to be able to read all the information first and be able to think of the questions that I would have, and how it pertains to my treatment and how I feel. I really enjoyed this way over being at a conference.

Eric Fitzsimmons:

Great. That's wonderful to hear. I know from my experience seeing some of these tools have been seeping in to conferences and to see them suddenly become so widely available, it's hopeful to see them become more a part of the experience for everyone going forward.

I want to wrap up going back to Julia and Christine. I know this year it's kind of hard to talk about plans, but what are your plans for the future of GRASP?

Julia Maues:

I'll address the easier part that doesn't have that much uncertainty about meetings, and, that's another part of GRASP that we're working on. It's a database of researchers and advocates. We always say they should include patients from the very beginning in the thinking of the question and all of that, and we want to help them create that connection. We want to match them with people that are maybe near them, maybe they are living with the exact subtype that they're studying. Then also from the advocate side, we want an advocate that is interested in research and lives with one specific type of cancer to connect with researchers working on that so that she or he can share that experience.

Christine Hodgdon:

And I can say that I think we're going to continue to show up at conferences, whether it's virtual or in-person. We prefer the in-person, but we're kind of getting used to this virtual setting. What I like about this also as the other advocates have mentioned, is that people who could not attend this conference can attend something virtually. So in the future, I haven't even told Julia this yet, but I could see us doing both where we'd have it in-person, and then afterwards we have virtual.

I would also love to see us expand beyond breast cancer. We did have a few representative advocates from carcinoma. I think kidney cancer, there were a few others. We would love to expand this to other cancer groups and anywhere that there's results being published about patients and that can impact patients. They should be at these conferences. They should be a part of the equation. So it could go beyond breast cancer. It can go beyond cancer.

Eric Fitzsimmons:

That's so exciting to hear. And one of the, I just referenced it, but one of the positive things about seeing everything this season has been seeing how quickly people have learned and adapted and all the new ways were finding to reach out and include all sorts of people.

Thanks to everyone for participating and sharing your perspectives on the GRASP program. If you at home want to learn more about the program and their plans for the future, visit graspcancer.org. Also, if you want to learn more about breast cancer news coming out of this year's ASCO annual meeting, visit LBBC.ORG for reports on major stories and interviews with experts to help you understand what's new and how it could affect you. We've been reporting all week and we have more reports still to come. Thanks again for joining us.