Lisa Hatfield:

Dr. Gamble, what are the key challenges regarding the current paradigm of disparities research and gynecologic oncology, and what steps are proposed to overcome these challenges? And what is the role of the patient? 

Dr. Charlotte Gamble:

I love this question. This is such a great question because this is like my happy space and where I live, when I’m not taking care of patients directly and kind of where my research interests lie. So to take each question, each question, each part of this question, what are the key challenges regarding the current paradigm of what’s called disparities research? So I think a couple of challenges. One, historically disparities research just meant like looking and seeing what these patient outcomes were and who lived longer and, oh, no, it looks like Black patients are not living as long as white patients, and it looks like poor patients aren’t living as long as rich patients.

And it looks like patients who are living rurally don’t live as long as patients who live in the cities. And so just finding differences and seeing kind of how, again, this critical race practice and how the systems and structures in the United States have contributed or might contribute to these differences that we’re seeing, has classically and historically been easy low hanging fruit.

You look at these large cancer databases, you look at the SEER database, the National Cancer database as well, and can get, pull all these statistics and come up with pretty graphs that just show really wide disparities in Black versus white and versus Hispanic versus non-Hispanic and just say, hey, there are differences and people who are historically marginalized or vulnerable just don’t do as well, which is, okay, fine and good and maybe necessary to have that data to know where we’re starting from. But a challenging in that is that just shows some associations. There is not necessarily causation. There is no attempt to fix the system. It’s merely just stating these are where, this is where we’re at. And at this point, frankly, in 2024 and honestly for the past 15 to 20 years, it’s not anything new. It’s nothing that’s surprising.

 Like these have been trends that have been pretty ingrained in this social system and healthcare system that we have in the United States. And so doing kind of disparities that just discusses these differences is a little bit outdated at this point. I think, to answer the second part of that question, what are steps proposed to overcome these challenges? Really moving into, okay, so these differences are there, what are we going to do? So what are these solutions? What are the evidence-based solutions to these differences in how we overcome? So that spans anything from looking at sometimes the molecular tumor makeup that might be different based on ancestry or maybe based on exposure to racism. How does exposure to racism and or stress and over a lifetime influence cancer biology?

If someone has been minoritized and has been exposed to stress because of this for their entire lives, does that change their cancer risk or change the type of cancer they have or change how when they are diagnosed with cancer, how they respond to treatment. None of this has really been very aggressively studied within the gynecologic cancer space.  Some of this within the breast cancer space has been looked at, but not very much with the gynecologic cancers.

But then also importantly in this space that I love to live in is, okay, so like, how are we going to overcome the barriers that we discussed earlier? How do we get patients into the healthcare system a little bit earlier when they have abnormal symptoms? How do we get them to a subspecialist if they have transportation barriers, insurance barriers, health system barriers, and how do we actually address what we already know is the problem if they face delays in care, how do we shorten those intervals so they get timely care? And those are harder questions.

It’s harder to publish, it’s harder to get these studies done. They’re really messy. And I think that, there’s a lot of need to actually look at how the system is working or not working for patients and actually doing evidence-based strategies that we know, ie for example, care navigation to help improve the timeliness of care that patients receive.

To answer, and this dovetails well into the third part of the question, which is what is the role of the patient? This is critical because as we start thinking about actually designing interventions to work or to address these barriers, to care, to influence disparities and outcomes, of, patients with these cancers, patients are the center of what we do, and they have to be the center of the research, and they cannot be consulted on the back end after someone has come up with a very pretty project that sounds really nice and like can get funded easily.

 They have to be at the center at the start of the project. And so I think it’s really important to center voices of patients in designing research protocols, center them in designing clinical trials, center them in designing community-based outreach programs. This has to, not only come from patients, but feel like it is a patient almost run program. And, I think Kemi Doll really in the gynecologic cancer space, has, been a fierce advocate for, including patients and centering patients and, having patients lead as opposed to follow, as opposed to being adjacent to the project, but being really central to it and to its functioning.

And so when we think about the interventions, when we think about the research questions that are yet unanswered, oftentimes these answers as well as the, logistics of how to get these programs done lies within patients, their communities, their loved ones themselves, and failure to involve them early in the process is a failure of the research project in general. I think my activation to this question is actually for healthcare providers and researchers, is that we have to think about action and what, the evidence-based strategies are to help directly affect the disparate outcomes we see in America for our patients with cancers and to center patients and their concerns within these research questions.