Barriers to Participation in Hematology Trials | Shakira Grant, MBBS & Jiona Mills | ASH 2022

Hi, I'm Dr. Shakira Grant from the University of North Carolina at Chapel Hill, and I'm an assistant professor in the Division of Hematology and a geriatric hematologist. And with me I have... Hello, my name is Gianna Mills. I am a second year Master of Public Health student at the University of North Carolina at Chapel Hill Gilly School of Global Public Health. Awesome. Well, today we wanted to just talk a little bit about our research that was presented here at the annual meeting. We presented three oral abstracts. Two of these abstracts were focused on examining barriers to participation in hematology-focused clinical trials. And the third abstract was focused on examining healthcare access barriers for patients with multiple myeloma receiving care. For this study, kind of starting with the healthcare access barrier study, our rationale for really performing this study is the understanding that disparities exist among patients with multiple myeloma. In particular, we see a high burden of racial disparities, especially between Black and White patients with this disease, that influences outcomes as well as survival from multiple myeloma. Therefore, with this knowledge, we designed a qualitative study to provide us with more in-depth understanding about these factors and how they can be contributing to patients' ability to access quality myeloma care. So for this part, I'm going to turn to Gianna, as she was the one who conducted all of our interviews, to share a little bit about her experience with qualitative research for this particular study. As Dr. Grant mentioned, our goal was to recruit primarily Black patients. And so in doing that recruitment, we took several approaches. At first, we started with making cold calls, calling patients that were eligible, as well as sending out email communications. We found that that approach was not successful for our Black patients. So we came together as a team and found other strategies. And one of those strategies was making sure that we were able to meet patients in person during their cancer visit. So that means that finding time when they might have had wait times in between their appointment and we would come and meet them in order to have conversations with them about the study, just approach them and say, hey, we're doing a study. We thought we heard that you would be a good candidate from your provider. And I think for them, seeing our faces really made an impact on their interest in our studies, for sure. And I also, whenever I would recruit a patient, I also mentioned that I would be the person that would conduct their interviews. And I think that knowing that they would see me again, I also encouraged them to be a part of the study. And yeah, and I also mentioned as well, when conducting these interviews, one of our focuses was making sure that our Black patients were comfortable. And so at the beginning of the interview, we'll always say that we're not looking for any right or wrong answers. We want to make this a comfortable environment for you. And that's what we carry throughout the interview process. And that allow our Black patients to open up and really share about their experiences navigating the health care system and receiving the myeloma care. Great. So with that knowledge in terms of getting our study up and running, we found some important results in terms of the barriers to accessing health care. These included that patients reported they were having delays in reaching the diagnosis of multiple myeloma. And these delays were happening at the level of the primary care provider not initially recognizing or following through with workups for multiple myeloma and attributing symptoms to other non-specific conditions. We subsequently saw delays in referrals to myeloma specialists or hematologists and then additional barriers such as financial concerns, accessibility and transportation issues, which really limited how patients were able to access our comprehensive cancer center. In terms of this study's findings, we do believe that the finding, especially around delayed diagnosis and delayed referrals, is one in which we need to be thinking about interventions to potentially support these individuals. One potential strategy that we learned from our patient participants as well as our caregivers who enrolled in this study was to increase the educational outreach efforts, especially in rural communities to the general public as well as to providers so that they become more aware about multiple myeloma, which is still considered to be a relatively rare disease and also is presenting symptoms and the subsequent steps for evaluating for treatment. So in terms of this overall study implications, we do believe that the findings support other large quantitative studies that have shown that Black patients in particular experience access barriers that ultimately influence their outcomes. These studies show that we really need to address these barriers so as to drive more equitable care for this population. In our second and third studies that we wanted to highlight, we really looked at barriers to clinical trial participation for Black patients in particular. We did this study by interviewing Black patients with multiple myeloma and we also interviewed academic hematologists at our single center, the University of North Carolina, Lemberger Comprehensive Cancer Center. And during those interviews, we asked them questions about what are some of the challenges that Black patients in particular face when trying to enroll in clinical trials. We also asked questions from hematologists about their own experiences discussing trials with participants. What we found in this particular study is that there were multiple factors that Black patients in particular as well as hematologists perceived from their end that limited enrollment of trial participants. These include absence of trust or mistrust in the health care system, the trust between the patients and their providers, and trust between the research and the patient themselves. A lot of these issues around trust really stemmed from events such as Tuskegee where patients honestly talked about the effect that this still had for them even in 2022. Additionally, we wanted to highlight something that came up in our findings, which was the idea of hematologists perceived discrimination and stereotyping where some patients were not offered the opportunity to participate in a clinical trial based on the patient's race as well as the patient's socioeconomic status. Finally, we looked at several other factors and one that really stood out was the idea around communication. What is the language that we're using when we're talking about trials for Black patients, especially with multiple myeloma? For them, use of the word trial really felt like it was experimental with some of them sharing that this felt like they were being experimented on or that they were a guinea pig. So taking these findings together, we do believe that this is an important step in helping us to really understand these complex yet interrelated factors that occur at multiple levels. So not only at the individual level where individuals may experience or have a history of racial or other types of discrimination, but also at the interpersonal level between the patients and their providers, as well as organizational structures that really limit whether or not Black patients in particular with multiple myeloma are offered the opportunity to participate in a trial. So in terms of our next steps, we do believe that there are several steps that can be taken. This includes the need to develop multi-level interventions targeting all of those levels that I talked about previously. Such interventions also need to be targeted towards patient provider communication, the type of language that they're using, the perception or perceived bias and discrimination towards patients who are coming from socially vulnerable backgrounds, as well as thinking about use of the word trial and whether moving forward, this is something that we could potentially change in our language, instead of saying trial, thinking about referring to it as a research study. So all in all, I'm going to turn to Gianna at this point and ask her if she could just summarize what her experience and what we consider as her positionality doing this type of research, how that may have impacted the way that she viewed the results that we found. For sure. Yeah. So I wanted to acknowledge my positionality as a Black woman in conducting these interviews. And I'm also from the rural south, from a small town. And some of our patients came from similar areas of similar backgrounds. And I believe that that connection from the beginning really allowed for us to kind of have these conversations with our patients. We were able to kind of use words that, in terminology, that they under layman's terms in our interviews. And I think that allowed for them to open up and have a conversation with us rather than feeling as though they were being interviewed. And I think, and when we're looking at their results, these are a lot of things that we kind of approach in our methods. We recognize that Black patients may have a certain level of mistrust in the health care system. And we implemented that in our methods. And of course, we learned lessons along the way. But we think that having that knowledge of what our patients were experiencing and infusing that in our methods allowed for it to even come out even more in our results, for sure. So a summary. We want to acknowledge and just first thank the patients and caregivers for participating in this study. Our findings from these qualitative studies does provide new information about the complex factors that drive the access to care, in particular the opportunities to participate in clinical trials. We do believe that there needs to be concentrated efforts, looking at especially clinical trial enrollment of diverse populations, as this will enhance generalizability of findings and ensure that the populations who are likely to be using these therapies the most in the real world actually are being studied so that we can then apply our findings. So with that, I want to thank you and thank Gianna also for joining me today. Thank you.