Megan-Claire Chase on Initiative From GRYT Health to Combat Clinical Trial Disparities

CancerNetwork® spoke with Megan-Claire Chase, the partnership director for GRYT Health, about the Diversity in Oncology initiative aimed at raising awareness about health disparities by fostering conversations among patients and caregivers and presenting solutions for greater representation in clinical trials.

GRYT Health is partnering with Bristol Myers Squibb (BMS) for this initiative by hosting a series of live, interactive virtual events bringing together “local and national organizations, patients and caregivers, health care providers, clinical trial teams and principal investigators, schools of public health and others” to discuss strategies for delivering equitable health care.

“That’s what’s really exciting about this initiative,” Chase said in her conversation with CancerNetwork®. “It’s digging deep and talking directly to the people who are experiencing barriers and challenges, from patient all the way to academia and professors of public health.”

CancerNetwork®: What really compelled you to get into this area of health and why are clinical trial disparities are so important?

Chase: I am a 5-year breast cancer warrior. It’s exciting to be part of GRYT Health and collaborate with Bristol Myers Squibb [BMS] at this time. Health disparities exist in the United States, and it’s unacceptable. Due to the heightened conversations around health disparities brought on by the pandemic, it’s important to address these necessary conversations and issues and keep that conversation going [by harnessing] that energy and hearing directly from the underrepresented communities that this directly affects. I put myself into that [community] too, as a Black woman, and [we want to] work together to develop real solutions and real takeaways that we can start to implement now.

Could you tell me a little bit about this initiative and what you hope to achieve through it?

It’s important that we first acknowledge the disparities and then take that action. That’s why we’ve been excited to collaborate with BMS. [We are] working to hear the voices that have been left out. This is a great collaboration because we’re going to be hearing directly from those who are impacted and have experienced barriers. We’re hearing directly from patients from the Hispanic community, from the Asian and Pan-Asian community, from the African American community, and then even from a caregiver perspective as it relates to clinical trials. It’s so important that they’re hearing these lived experiences and challenges, and that the audience will take heed of this and realize that no one is elaborating or making things up. This is a serious conversation and we want to hear it because once you know the issues and what these diverse communities are experiencing, then we can work together to take action. This collaboration is about finding out what you may not know, learning about it, and then seeing what we can do to make a change. Unfortunately, some patients have been somewhat dismissed in this industry, but moving forward we can start making changes for them to have more positive experiences now and in the future.

What can attendees expect from the virtual experiences and what do you hope to accomplish through it?

The Diversity in Oncology initiative is a virtual platform that brings together diverse voices into a collaborative space. This is something that we have done with BMS in the past. We have our Advocacy Exchange, which evolved out of the COVID Advocacy Exchange, which is a similar virtual platform for live educational opportunities, resources, and collaboration. That project also has Working Groups developed around 4 areas that the advocates themselves identified as priority areas. We want to have that same feel for this where we have the audience participation, but then we also want to make it intimate too. After hearing the stories, [participants will] be able to ask questions, hear responses, and really interact with presenters. Key learnings from each conversation will be available as resources afterwards, as well as the recording of the full program, so if someone can’t attend live they can still be involved in the conversations.

Can you discuss the session focusing on the experience of diverse patients and families in clinical trials?

Our first session that launched the series on October 27 was [about] different patient and family experiences. We felt it was important to bring in the caregiver perspective because if you think about it, if that patient doesn’t speak English, their caregiver will [need to] speak English. What information is given to that patient if the caregiver isn’t there? It’s learning about the challenges, access, and barriers that each of these patients have experienced. We heard, their personal cancer stories and the challenges that they faced. These powerful stories illuminated challenges that some were surprised to hear. We’re hoping that attendees not only hear, but start to understand the frustrations our panelists have endured. We hope attendees get revved up and say, ‘we need to change this. Here are some real-world actionable next steps that we can do based off what these patients [said].’

Describe some of the other sessions that are featured at the event and what we can expect? What kind of topics are we going to hear about?

The upcoming sessions will all be available on the same virtual platform. They’ll focus on topics relevant to bringing awareness to and to developing solutions for healthcare inequities. It’s going to include the experience of diverse physicians, principal investigators, and clinical research to improve representation of diversity, clinical trials, and new models of academia and community collaboration in terms of clinical research. Our second session was on November 16 and featured the voices of diverse physicians and clinical research investigators who discussed, from their perspective, the challenges that they face providing care. We’ll have 2 additional sessions that are planned for January and February 2022, and those are focusing on community and the academic partnerships. As we secure the community support and organizations, we will also be able to build an even larger virtual resource page on the platform that’ll have these resources and people will be able to access this information about advancing health equity. That will be available 24/7 once they’re logged in.

In a news release, you mentioned that the initiative acknowledges real and current issues in clinical cancer trials and how they need to be repaired. Could you expand on that? Specifically, what do you feel can be done to fix these issues and what do the issues currently look like?

As the moderator for this first session, I’m heavily invested in these types of conversations, as both a patient and an advocate. For GRYT Health and Bristol Myers Squibb, these diverse populations are underrepresented in clinical trials or not represented at all at any stage of the research. It wasn’t until 1985 that the government even acknowledged the existence of health disparities when it was published in a report on black and minority health.² It wasn’t until 1993 that Congress mandated adequate inclusion of women in clinical trials. We have a lot of ground to cover with these diverse populations experiencing challenges related to awareness, access, and technology. Many people assume everyone has access to the same resources, which is not the case.

Another challenge for clinical trials is transportation. If you’re trying to reach certain communities—not everyone lives in the suburbs, some people have to take a train or bus line—what are you doing about their schedules? When you’re part of a clinical trial, there’s a lot that goes into that. If they have to miss work, they may not get paid for that day. What are we doing to accommodate the patients that we’re trying to recruit and have represented in these clinical trials?

Something that I often like to say is, ‘there are things that need to happen in this clinical trial space, to be acknowledged, and implemented.’ First, with underrepresented communities, you need to see us, and you need to listen to us. Too often when we’re talking with our physicians, we’re dismissed, and our pain is not believed. Believe us when we say our pain is at this level. History says, and it’s racist history, ‘Black skin is thicker, so therefore it can handle pain better.’ We need to change that conversation and let doctors know that is absolutely untrue. If you’re going to tell a patient, ‘I think there’s a clinical trial that’s best for you,’ if you haven’t listened to [anything about] what [the patient has] been saying, it’s not going to matter.

We need to really build that trust together. That’s what GRYT Health and Bristol Myers Squibb are doing. They’re recognizing that we need to not just build a bridge, but we need to meet together. We want to understand, hear, and acknowledge the history of what each of these communities that have experienced regarding healthcare, and say, ‘we’re not going to talk at you, we want to listen so we can work together and collaborate to come up with something together to show that we are serious, and this is not performative.’

How do you gather momentum to turn acknowledgement into action and address some of these gaps and disparities that you’ve mentioned before?

It’s exciting when you find organizations, like GRYT Health and Bristol Myers Squibb, that want to hear [from patients] and listen. That’s how we’re building that momentum, and the patients [and physicians] we’re talking are excited because they finally feel like [they’re] being heard. That is the momentum to say what needs [to be said], because this is going to be a very safe space for these hard conversations. We’re making a point of saying this is a safe space for you to be honest, because this is not the time to hold back. If this is something that you are experiencing when you’re trying to get a trial together, and you are a Hispanic or Latin researcher, what is that barrier? We need to know that.

References

1. GRYT Health and Bristol Myers Squibb Team Up to Launch Diversity in Oncology Initiative. News release. GRYT Health. October 14, 2021. Accessed November 15, 2021. https://tinyurl.com/697td4zf
2. Department of Health and Human Services, Task Force on Black and Minority Health. Report of the Secretary’s Task Force on Black and Minority Health. U.S. National Library of Medicine. 1985. Accessed November 17, 2021. https://bit.ly/3DvmwID