At the May 2023 SEEK Color Virtual Workshop, Dr Shikha Jain from the University of Illinois moderated a panel discussion on disparities in gastrointestinal (GI) cancer care, along with Dr Jacquelyne Gaddy from Yale University, and Dr Cathy Eng from Vanderbilt University.
Dr Eng, a colorectal cancer specialist, began with an overview of racial disparities in GI cancer, noting that she primarily sees patients presenting with more advanced (stage IV) cancer, often as a result of misdiagnosis, or patients not having been screened appropriately. She emphasized the fact that the vast majority of clinical studies in colorectal and other cancers have been conducted in predominantly Caucasian populations, with a profound underrepresentation of minorities. As such, she noted that a “selection bias” exists in the cancer literature that must be considered when treating minority patients. She further emphasized that not all patients have adequate access to care, and there is a need for patient outreach, especially with minority populations.
Dr Gaddy agreed, noting that, while minorities have been underrepresented in GI cancer clinical trials, they are no less impacted by, for example, colorectal cancer, with Black patients having both a higher incidence and mortality from colon cancer, and being diagnosed at later stages. She further noted the increasing incidence of colorectal cancer in younger patient populations, which is also reflective of the disparities in incidence and late diagnosis, and she suggested this is likely a result of both inadequate screening and/or poor dietary options in minority populations. Dr Gaddy stressed that social determinants of health are especially important to understand and assess in minority populations from the time of diagnosis, for example, why did they miss an appointment, or why were they not screened – was it due to lack of insurance coverage, lack of transportation, etc. These factors, she suggested are just as important to consider as, for example, lab values and test results in minority patients.
Dr Jain agreed, and raised an additional issue of inherent minority mistrust of the healthcare system, which can lead to reluctance to come see a doctor, or get regular screenings from their primary care physician. She also reemphasized the importance of social determinants of health as a critical parameter to understand and try to address in minority patients, and asked the other panelists about their thoughts on how to get patients in earlier.
Dr Eng noted she would like to see a greater emphasis on prevention and screening, but in the setting of colorectal cancer screening it can be a real stress and hardship for patients to take the time off from work, to do the prep for colonoscopy, and to have someone drive them to the appointment. She also noted that many patients are reluctant because of the colonoscopy prep itself, which leads to less uptake for screening, and although less invasive options like ColoGuard are now available, many patients don’t have a primary care physician to encourage regular screening. Dr Eng further noted that, while telehealth visits can be helpful to encourage more screening, licensing and paperwork requirements for telehealth are burdensome for clinicians, and vary across different states, so this can be a barrier to more widespread telehealth practice. She also noted her own mother, who was diagnosed with rectal cancer at stage III, and the overall reluctance, particularly in the Asian population, to talk about screening, and even a reluctance to talk about cancer in general.
Dr Jain agreed about the telehealth issue, noting that during the pandemic, clinicians found a huge opportunity with telehealth to improve access to care. She thought “we absolutely need to be loud” about expanding telehealth and she thought it was “ridiculous” to not be able to practice telehealth across states, because “treating cancer is treating cancer…” regardless of what state you are in.
Regarding the mistrust issue, Dr Gaddy emphasized that the burden should not be placed on the marginalized and minority populations to be more trusting of the system, but rather, as clinicians, “it’s on us” to understand the reasons behind the mistrust, and acknowledge the historical failings of the system that may have occurred with the patient, or with their older relatives, as a first step to rebuilding a more trusting and collaborative relationship with the patient and within the community.
Dr Jain agreed wholeheartedly, and noted the importance of “finding your community champions” and partnering with the community, and sometimes with the patients themselves. She reemphasized that it is essential to relate an empathic understanding of past injustices that may have occurred, and the underlying reasons for a mistrust of the healthcare system, and then asking, “what can we do” to help you, as a patient, regain that trust. In addition, after having related that, she suggested asking questions like, “would you be interested in being a trusted messenger in your community… would you be willing to talk about colon cancer screening at your church, or with your family?” She also highlighted the importance of never calling a patient “non-compliant”. “It’s not about non-compliance… it’s about what are the barriers that are preventing them from carrying out the plan that we have recommended for them.” She suggested instead using language like, “in an ideal world, this is what I’d like you to do… but you tell me if this is feasible”, or if not, “what can we do to make this something that you can possibly implement and how can we modify it.” She suggested that by making it more of an active partnership with the patient, patients can have more ownership of their disease and its treatment plan, and this is especially important in the setting of cancer, when patients can feel as though they have lost all control.
Dr Eng agreed, and also expressed a concern about language barriers, noting that, at her institution they have a person who is especially experienced and proficient in the Latino population to assist them. She noted, however, there is a real need for proficiencies in other languages and cultures to accommodate an increasingly diverse patient population at her center. Dr Jain also noted the importance of finding out where patients are getting their information from (e.g., social media, newspapers, TV), and then provide information to them in a way that they can digest it, understand it, and trust it.
On the topic of increasing clinical trial enrollment, Dr Gaddy noted that certain clinical trial inclusion/exclusion criteria for trials have prevented minority patients from being included in clinical trials, for example, things like comorbid conditions. Beyond this, however, she noted that a major problem is that minority patients are simply not asked to participate in clinical trials, which can be due to inherent racial biases among clinicians. She emphasized that when patients are asked, and (importantly) are appropriately educated to make and informed decision about trial participation, they are often more than willing to do so. Dr Gaddy also noted the importance of “looking like” the patient in front of you and speaking to them in a way that they can relate to, for example, she noted, she is often asked would you participate yourself if you were in a similar clinical situation, or would you have your own family member (e.g., your mother or father) participate? Dr Jain agreed, and reemphasized the importance of having, not only physicians, but also individuals in administration and leadership that look like the patient populations they serve and who can relate to the patient in a meaningful way. In addition, because the oncology field is laden with jargon and complex concepts in treatment, it is important to limit jargon and communicate to the patient as if you were communicating with a family member or a friend, in an effort for them to truly understand and be able to make informed decisions about their care.
Dr Eng noted that, although it is less of an issue at her center, time constraints can be a real problem for enrollment in clinical trials in the community setting. She also noted a language barrier problem, for example, the need for translating an entire clinical trial consent statement which can be costly. She noted this can be a bigger problem with, for example, National Cancer Institute (NCI) trials, which are frequently underfunded, relative to industry sponsored trials. She further noted opportunities for community outreach to answer important questions like “what is a clinical trial?” and “how can this trial benefit you?” She noted, for example that many patients worry about being on placebo, however, many trials nowadays don’t even have a placebo arm, or if they do, it’s only because no other standard of care exists. She again cited telehealth as an option for patients to participate in trials who do not live close to a major academic center.
Dr Eng added there is now a real need to encourage clinical trial participation, particularly in the setting of GI cancers, as there are a number of small subsets of patients with specific biomarkers, such as human epidermal growth factor 2 (HER2) that can benefit from specific treatments, and in order to identify such patients, a large number of patients must first be screened for that marker. She also stressed the importance of making trial participation easier on patients and ensuring that patients can stay active on a clinical trial. One possible way she suggested is, if a patient is on the control (standard of care) arm of a trial, to allow the patient to be under the care of his community provider while on trial, with a once-a-month telehealth visit so they can continue the trial rather than discontinue treatment. Dr Jain agreed, and added that it takes considerable time to enroll patients in clinical trials, and when clinician compensation is linked to the number of patients being seen in a day, often they can be left with only 10 or 15 minutes with a patient. She added: “This is not the way to take care of our patients… we should be able to spend time with them, and utilize things like telehealth, allow them to see their primary care physician if they are on standard of care…”
As a summary of top line action steps, Dr Gaddy stressed that, while the problem of racial disparities will not be solved overnight, one of the most important components is increasing communication and engagement with the minority community. She added that, if a particular community is to be studied, they need to participate in this process from the start, and one way to do this is through the use of community advisory boards. Such boards are now attached to almost every cancer center, and provide a “boots on the ground” set of individuals to help assess whether specific programs would, or would not be of interest and appeal within the community. She further cited social determinants of health as an important area to study and better understand within minority populations.
Dr Eng summarized by advising first for patients to pay attention to their symptoms, recognize them early, and if their symptoms do not resolve, seek a second opinion. She agreed with the need for more community outreach and engagement at, for example, places like churches and community centers, and also stressed the need to follow up and to assess metrics of how that particular intervention, lecture, or discussion worked. “…Did they learn from what was presented? …Did they follow up with their physician? …Did they actually go and get that screening completed?” Because, she added, “There was a reason that they showed up at that community center…”
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You can view the full panel discussion from the SEEK Color Workshop here: