CancerNetworkÂ® spoke to Megan-Claire Chase, Director of the GRYT Health Partnership, about the Diversity in Oncology initiative, which aims to raise awareness of health inequalities by encouraging patient-caregiver conversations and finding solutions for stronger ones Representation in clinical trials will be presented.
GRYT Health is partnering with Bristol Myers Squibb (BMS) on this initiative by hosting a series of live interactive virtual events bringing together “local and national organizations, patients and caregivers, health care providers, clinical study teams and principal investigators, public schools” health and others âto discuss strategies for equitable health care.
âThat’s what’s really exciting about this initiative,â Chase said when she spoke to CancerNetworkÂ®. “It goes deep and speaks directly to the people facing barriers and challenges, from patients to colleges and public health professors.”
CancerNetworkÂ®: What really made you move into this healthcare field and why are the differences in clinical trials so important?
chase: I am a 5 year old breast cancer warrior. It’s exciting to be part of GRYT Health and Bristol Myers Squibb. to work together [BMS] at this moment. There are health disparities in the United States, and that is unacceptable. With the heightened conversations about health inequalities caused by the pandemic, it is important to address these necessary conversations and issues and to keep those conversations going [by harnessing] this energy and hearing directly from the under-represented communities that this directly affects. I got involved with it [community] also as a black woman, and [we want to] work together to develop real solutions and real insights that we can implement now.
Can you tell me something about this initiative and what you want to achieve with it?
It is important that we recognize the differences first and then take action. For this reason we look forward to working with BMS. [We are] work to hear the voices that have been left out. This is a great collaboration as we will hear directly from those who have been affected and have experienced barriers. We hear directly from patients from the Hispanic community, from the Asian and Pan-Asian communities, from the African American community, and then even from a nurse’s perspective regarding clinical trials. It is so important that they hear these lived experiences and challenges and that the audience takes this to heart and realizes that no one is working out or inventing anything. This is serious conversation and we want to hear it because knowing the problems and experiences of these diverse communities allows us to work together to take action. This collaboration is about finding out what you may not already know, learning about it, and then seeing what we can do to change something. Unfortunately, some patients in this industry have been laid off somewhat, but in the future we can start making changes so that they can have more positive experiences now and in the future.
What can the participants expect from the virtual experiences and what do you hope for?
The Diversity in Oncology initiative is a virtual platform that brings together different voices in a collaborative space. We have done that with BMS in the past. We have our Advocacy Exchange, which evolved from the COVID Advocacy Exchange, a similar virtual platform for live education, resources, and collaboration. In this project, working groups were also developed around 4 areas, which the lawyers themselves identified as priority areas. We want to have the same feeling of where we have the audience, but then we want to make it intimate too. After hearing the stories [participants will] be able to ask questions, hear answers and really interact with the moderators. The most important insights from each conversation will then be available as resources, as will the recording of the entire program, so that someone who cannot be there live can still take part in the discussions.
Can you discuss the session, which focuses on the experiences of different patients and families in clinical trials?
Our first session that started the series on October 27th was [about] different patient and family experiences. We found it important to bring the nurses perspective because if you think about it, if this patient doesn’t speak English, their nurse will [need to] speak English. What information is given to this patient when the carer is not there? It’s about learning about the challenges, accesses, and barriers that each of these patients has experienced. We heard their personal cancer stories and the challenges they faced. These powerful stories highlighted challenges some of which were surprised. We hope attendees not only hear but understand the frustrations of our panelists. We hope that the participants will get going and say: âWe have to change that. Here are some real actionable next steps we can take based on what these patients are doing [said]. ‘
Describe some of the other sessions that will be featured at the event and what can we expect? What topics will we hear about?
The upcoming sessions will all be available on the same virtual platform. You will focus on topics relevant to raising awareness and developing solutions to health inequalities. It will draw on the experience of various physicians, senior researchers, and clinical research to enhance the display of diversity, clinical trials, and new models of academic and collaborative collaboration related to clinical research. Our second session, held on November 16, presented the voices of various clinical research doctors and researchers who discussed the challenges they face in care from their perspective. 2 additional sessions are planned for January and February 2022, focusing on the community and academic partnerships. As we ensure the support from the community and organizations, we will also be able to create an even larger virtual resource page on the platform that contains these resources and people will access this information to promote equity in healthcare can. This is available around the clock as soon as you are logged in.
In a press release you mentioned that the initiative recognizes real and current problems in clinical cancer studies and how they need to be addressed. Could you elaborate on that? What do you think can be done to fix these issues and what are the issues currently like?
As the moderator of this first session, I am very interested in these types of conversations, both as a patient and as a lawyer. For GRYT Health and Bristol Myers Squibb, these diverse populations are underrepresented in clinical trials or not represented at all in any phase of research. It wasn’t until 1985 that the government even recognized the existence of health disparities in a report on the health of blacks and minorities.2 It was not until 1993 that Congress ordered the appropriate inclusion of women in clinical trials. We have a lot to do with these diverse populations facing challenges of awareness, access and technology. Many people assume that everyone has access to the same resources, which they don’t.
Another challenge for clinical trials is transportation. When you are trying to reach certain communities – not everyone lives in the suburbs, some have to take a train or a bus route – what do you do with their timetables? When you take part in a clinical trial, there is a lot behind it. If they miss their job, they may not get paid for that day. What are we doing to meet the needs of the patients we are recruiting and who we have represented in these clinical trials?
Something I say a lot is, “There are things that are happening in this area of ââclinical trials that need to be recognized and implemented.” First, you need to see us in under-represented communities and listen to us. Too often, when we talk to our doctors, we get discharged and our pain is not believed. Believe us when we say our pain is on this level. The story goes, and it’s a racist story, “Black skin is thicker so it can handle pain better”. We need to change this conversation and let the doctors know that this is absolutely wrong. When you say to a patient, “I think there is a clinical trial that is best for you,” when you weren’t listening [anything about] What [the patient has] said it won’t matter.
We really need to build this trust together. That’s what GRYT Health and Bristol Myers Squibb are doing. They realize that we don’t just have to build a bridge, we have to meet. We want to understand, hear, and acknowledge the story of each of these communities’ experiences of health care, saying, “We are not going to speak to you, we want to listen so we can work and work together.” Finding something together to show that we mean business, and that is not performative. ‘
How do you gain the momentum to turn recognition into action and address some of these gaps and inequalities that you mentioned earlier?
It’s exciting when you find organizations like GRYT Health and Bristol Myers Squibb who want to hear [from patients] and listen. This is how we build this dynamic and the patients [and physicians] we’re talking excited because they finally feel that way [theyâre] be heard. That’s the momentum to say what needs to be done [to be said]because this will be a very safe place for those tough conversations. To be honest we want to say this is a safe place for you as this is not the time to hold back. If this is something you experience trying to get a study together and you are a Hispanic or Latin researcher, where is that barrier? We need to know.
- GRYT Health and Bristol Myers Squibb Partner to Launch a Diversity In Oncology Initiative. Press release. GRYT health. October 14, 2021. Accessed November 15, 2021. https://tinyurl.com/697td4zf
- 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. United States National Library of Medicine. 1985. Accessed November 17, 2021. https://bit.ly/3DvmwID