Tackling gynecologic cancer disparities: An assessment of two interventions for improving information exchange with racial/ethnic communities

Abstract

Racial health disparities continue to greatly impact the incidence and mortality rates of gynecologic cancers. While there are many drivers for these disparities, limited inclusion of vulnerable populations in clinical research and narrowed medical knowledge of patients are large contributors that disproportionately affect racial/ethnic communities. To mitigate these disparities, we must look for avenues that connect patients from these communities to cancer researchers. In this review, we summarize two projects that can serve as models for future interventions that promote education and engagement in clinical research for populations most impacted by gynecologic cancer disparities.

Introduction

Today, racial/ethnic disparities in gynecologic cancer incidence and mortality rates persist, and the drivers of these disparities are diverse.^1,2 Amidst efforts to mitigate these cancer disparities, few interventions have focused on the role that basic, translational, and clinical research play in both maintaining and mitigating gynecologic cancer inequities. Historically and still today, institutions conducting basic, translational, and clinical cancer research have struggled to meaningfully engage and integrate minoritized communities into research processes – from design to implementation and dissemination.^3,4 Such shortcomings contribute to disparities, yet research that is grounded in, guided by, and shared among the community, also shows potential to mitigate health inequity.^5,6

In this paper, we first present existing racial/ethnic disparities in the three most prominent gynecologic cancers (cervical, endometrial, and ovarian).To illustrate that a lack of engagement between impacted communities and gynecologic cancer researchers is a major contributing factor to existing gynecologic cancer disparities, we introduce two interventions, the Community Scientist Program and the Health for All Library Project, as models for future efforts to better engage minoritized communities in research to help realize the mitigation of cancer disparities. While the Community Scientist Program focuses its efforts on building connectivity between communities and basic and translational cancer researchers, the Health for All Project aims to better engage diverse communities in clinical research and trials.

Cervical Cancer

Cervical cancer was previously the leading cause of cancer death for women in the US. However, the incidence and mortality rates of cervical cancer have significantly decreased since the uptake of regular pap smears and HPV vaccines.⁷ Despite this decrease, cervical cancer health disparities continue to exist. In 2019, the incidence rate for cervical cancer was 7.5 per 100,000 women. When stratifying this by race, Hispanic women had a rate of 9.7 per 100,000 women, Black women had a rate of 8.2 per 100,000 women, and White women had a rate of 7.3 per 100,000 women.⁸ When looking at mortality rates, a similar trend can be seen with higher rates of death in Black and Hispanic women compared to White women.⁸ These differences have a direct correlation to the inequity of screening methods utilized, prevention efforts made and treatment protocols followed.^2,9 A study by Ford et al., looking at screening rates found that Black women when compared to White women had a higher pap smear screening rate but lower rate of being informed of an abnormal pap smear and receiving follow-up recommendations.¹⁰ A contributing factor to this difference in rates may be patients’ limited knowledge of cervical cancer screening. For example, Akinlotan et al., surveyed a study population of low-income women belonging to 3 racial groups: Black, Hispanic and White, in order to delineate barriers to receiving regular pap smears.¹¹ They found that among the 3 racial groups, Black women were significantly more likely to state that lack of knowledge was a barrier to screening.¹¹ Gaps in knowledge also accounted for disparities seen with respect to receiving the HPV vaccine, a large component of cervical cancer prevention. For example, Spencer et al., showed that non-White minoritized groups were more likely to initiate HPV vaccination but less likely to follow through with the full HPV vaccine series. One of the drivers noted for this loss to follow up was a lack of informed discussion.¹² These studies demonstrate the importance of patient engagement in medical decision-making and show that quality of care can be negatively impacted by a patient’s limited knowledge of evidence-based guidelines.

Endometrial Cancer

Health disparities in endometrial cancer are highlighted through differences in mortality rate. In 2019, the incidence rate of uterine cancer was 27.7 per 100,000 women.⁸ The incidence rate was roughly equal among White women (27.6 per 100,000 women), Black women (28.0 per 100,000), and Hispanic women (27.0 per 100,000). However, when looking at the mortality rate, Black women had a mortality rate of 9 per 100,000 women, while White women had a mortality rate of 4.6 per 100,000 women and Hispanic women had a rate of 4.3 per 100,000 women.⁸ This significant difference in mortality rate has been attributed to an unequal access to care, socioeconomic barriers, later diagnosis, and genetic differences in tumors.^9,13 Another significant contributor to this gap in mortality rate is the adherence to evidence-based guidelines. Studies found that compared to White women, Black women had a decrease in adherence to evidence-based care.^14,15 An editorial by Paskett & Bernardo speculates that this is partly because Black women were less likely to receive guideline-adherent treatment to begin with.¹⁶Among those that did receive guideline-adherent treatment, when stratified by socioeconomic status, those in the highest neighborhood socioeconomic status group had larger odds of adhering to treatments.¹⁴ However, even though these Black women that received timely access to evidence-based guidelines did have improved outcomes, they still had an increased 30-day and 5-year mortality risk when compared to their White cohorts.¹⁵ These findings suggest that adherence to evidence-based guidelines is not enough to eliminate observed disparities in endometrial cancer outcomes.¹⁶ Furthermore, a randomized clinical trial also saw that there was a 26% greater risk of mortality from endometrial cancer for Black women compared to White women even when they both received similar surgical and chemotherapeutic treatments.⁹ This further validates the idea that additional factors are at play in the mortality of Black women in the scope of endometrial cancer. It is also a call to action for further studies to be conducted that include Black women in order to find what factors most heavily impact this mortality rate.

Ovarian Cancer

Ovarian Cancer is the most lethal gynecologic cancer and like endometrial cancer, there are disparities in the mortality rate for black women.¹⁷ Although Black women do have a lower incidence of ovarian cancer compared to White women, their 5-year survival after diagnosis is 31% compared to 42% for White women.¹⁸ These differences in mortality rates may be explained by genomic differences, socioeconomic status, social factors, and cultural differences leading to differential treatments.¹⁹ Differences in quality of care and the standardization of evidence-based treatment have also played a role.^9,18 When looking at a cohort of women diagnosed with ovarian cancer, Hildebrand et al., demonstrated that White women were significantly more likely to receive surgery, chemotherapy, or a surgery-chemotherapy sequence.¹⁸ Furthermore, it was shown that only 60.8% of Black women received treatment aligning with National Comprehensive Cancer Network (NCCN) guidelines compared to the 70.4% of their White counterparts that received this treatment.²⁰ Risk factors identified for this difference in treatment were insurance status, treatment facility type, educational attainment, age, and comorbidities.²⁰ Another important factor that may contribute is gynecologic oncology consultations. Cronin et al. demonstrated that Black women were more likely to receive no surgery or chemotherapy if they did not have a gynecologic oncology consultation. In addition, all women regardless of race were more likely to receive guideline based care if they had a gynecologic oncology consultation.²¹ This reaffirms the impact of access to resources and the acquisition of medical knowledge for well-informed decision making.

As the field of gynecologic oncology continues to evolve, it is imperative now more than ever that we develop avenues to alleviate these cancer health disparities. This begins with empowering vulnerable populations with the tools, knowledge, and scientific evidence to further their own care. Currently, it is known that non-White individuals are included disproportionately less in clinical trials. Looking at trials from 1994–2013 there was a total of 45,259 patients: 83% were White, 8% Black, and 9% were Other. Using CDC data, enrollment of Black patients into trials was 15 times lower than expected for ovarian cancer, 10 times lower than expected for endometrial cancer, and 4.5 times lower than expected for cervical cancer.⁹ The American College of Obstetricians and Gynecologists also endorses that gynecologic cancers in general are not as well-known as other cancers. They emphasize the significance of patient awareness and education and define these as “crucial” methods for managing gynecologic cancers.²² Below we introduce our two projects The Community Scientist Program and Health for All: Real Talk Clinical Trials. Our hope is for them to be used as models for programming future efforts in empowering communities most vulnerable to gynecologic cancer disparities through education and engagement with scientific research.

The Community Scientist Program

Community scientist programs (sometimes called Citizen scientist programs) that facilitate direct engagement between scientific researchers and community members have shown great potential for building community trust of scientists and contributing to better informed research design and dissemination.^23–25 Community scientist programs aim to engage community members and laypersons as stakeholders throughout the research continuum. Generally, community members participating in community scientist programs undergo some level of introduction to the relevant field of research. Participating community scientists might then work directly with researchers to contribute to, and provide feedback regarding, study material design, data collection, and dissemination efforts.^23–25

While population research has increasingly integrated community stakeholders into the research continuum, efforts to do the same in basic and translational research have been limited and ultimately struggle to do so effectively.²⁶ Responding to this shortcoming, and cognizant of current cancer disparities in Chicago and across the country, our team designed and implemented a community scientist program at a large, urban comprehensive cancer center.

The established community scientist program assembled a cohort of six community stakeholders and three basic and translational scientists. Community stakeholders were recruited for participation from pre-existing networks and partnerships established by our team. The six community stakeholders involved in the program as community scientists represented several diverse community organizations and institutions in the cancer center’s catchment area, and included cancer survivors, patient advocates, community organization leaders, a nurse, and an educator. Over the program’s duration, community stakeholders working as community scientists met with basic and translational science teams to discuss research from a community perspective in virtual, small-group meetings facilitated by program staff. Through the facilitation of small group meetings between community scientists and basic and translational cancer researchers, the community scientist program aimed to cultivate meaningful, bidirectional connectivity between the two groups.

The program initially began with an informational, introductory meeting featuring all participants. This meeting allowed both the community scientist cohort and the basic and translational scientist cohort the opportunity to familiarize themselves with each other, as well as with the community scientist program model (adapted from the established, evidence-based University of Florida Clinical and Translational Science Institute Citizen Scientist Program, https://citizenscientist.ctsi.ufl.edu/). At this meeting, the group outlined program deliverables and goals, and the community scientist cohort was divided into three teams of two.

During the subsequent six months, community scientist pairs rotated through meetings with each of the three participating basic and translational scientists in two-month blocks. During each two-month block, community scientist pairs met virtually with their cancer center scientist counterparts twice in small-group meetings facilitated by program staff. In these small-group meetings, participants discussed the cancer center scientists’ work in lay terms and worked collaboratively to co-create infographics regarding ongoing basic and translational cancer research and other relevant subjects that would be appropriate for dissemination externally in the catchment area and internally among the cancer center. Amid the infographic co-creation process, basic and translational scientists further received valuable insight from community scientists, particularly regarding (1) the accessibility of the language with which they explain their work and (2) the applicability and significance of their research to the communities in the catchment area that community scientists themselves directly serve.

At the end of each two-month block, community scientist pairs rotated to work with the next participating basic and translational scientists. Infographics produced in earlier blocks were critiqued and refined, and further served as catalysts for discussion in new rotations. By the program’s conclusion, each community scientist pair had worked with each basic and translational science team.

Ultimately, 18 small-group meetings were completed, from which 19 unique infographics suitable for both in-reach to cancer center scientists and outreach to the catchment area were produced. The content of these infographics included: epigenetics, immunotherapy, food and cancer, (mis)trust and research, bias in the research pipeline, and the importance of communicating science effectively, among other topics. During small-group meetings, program participants ultimately also identified a need for an accessible, centralized platform to organize and disseminate the infographics created and resources discussed throughout the community scientist program. Currently, a web-based platform through which both community members and scientists will be able to access relevant information regarding cancer and cancer research is under development. The website will look to promote both in-reach to cancer center scientists and outreach to community members of the catchment area, and further represents one effort to better facilitate bidirectional connectivity between basic and translational researchers and communities most impacted by cancer disparities.

Health for All: Real Talk Clinical Trials Project

To date, public libraries remain an indelible part of the American social infrastructure, serving as avenues for people of any socioeconomic status to access resources and services free of charge.²⁷ In fact, a 2015 Pew Research Center survey found that more than two-thirds of adult Americans believe that closing their local library would have a large impact on their community.²⁸ This is especially true amongst lower-income Americans, Hispanics, and African Americans, groups that are more likely to rely on public libraries for internet access.²⁷ Beyond their initial function as places for book lending, libraries have taken on more important roles. For example, many libraries, including some Chicago Public Library (CPL) branches have librarians that act as ad hoc social workers and navigators. Within this capacity, the librarians focus on tailoring programs that meet their local communities’ needs and help local people navigate homelessness, available public aid programs, and various local health systems.²⁹ As a result, libraries are now seen as critical links to their communities by such sectors as healthcare. Indeed, even the National Library of Medicine now regularly hosts webinars and training sessions for local librarians to ensure that they may excel in their capacities as local navigators, able to help patrons navigate social services, mental health, welfare, education, and employment resources.²⁹ Ultimately, what we may begin to conclude is that public libraries can be considered key partners for advancing health equity.³⁰ To that end, here we describe the results of a research project born from a collaboration between the Center for Health Equity Transformation and Chicago Public Library (CPL).

Health for All: Real Talk Clinical Trials (healthforallproject.org) is a web-based tool designed in partnership with CPL.³⁰ The tool’s purpose is two-fold: 1) to help people learn more about clinical trials and 2) help librarians be better navigators by giving them an easy-to-understand resource that they may share with library patrons who express interest in learning more about clinical trials. When the project began, flashcards were used as research literacy support tools along with early paper designs of what the final website could look like. Many hours were spent interviewing librarians, library patrons and other stakeholders about how they looked for information, and how they used computers and the spaces around them. The research team also met with CPL, which would later identify six diverse library branches - representing its northern, central, and southern districts – to deploy the design-thinking process for the development of Health for All. Time was then devoted to going to these different CPL branch locations to make in-person observations about how people moved around these spaces, where they congregated and how they interacted with the resources available to them.

Following our team’s direct observations, the next step was to host group design sessions with CPL patrons. These design sessions were focused on getting participant feedback on the first models (paper prototypes) of the Health for All tool. The benefit of these paper prototypes is that they are easily modifiable and thus a favorable avenue for conducting rapid iterative testing of a proposed website interface prior to the actual development of the web-tool. Ultimately, seven iterative design sessions via focus groups of library patrons and library staff at the six identified CPL branches were conducted and included a convenience sample of 3–6 patrons and librarians recruited through bulletin board flyers. Participants had to be 18 years of age or older to participate. All design sessions were conducted in English, audio-recorded and the agenda for each session included three items: 1) a storyboard of a typical library visit, 2) a facilitated discussion aimed at identifying participants’ understanding and awareness of the underrepresentation of racial/ethnic minorities in clinical trials and 3) generating feedback from participants on the benefits and limitations of the paper prototype version of the Health for All tool. Feedback received from these design sessions were then used to make improvements to the model leading to the development of two main prototypes of the Health for All website: 1) a single-page web tool with a long-scrolling layout in Wordpress (prototype 1, version 1) and 2) an InVision App click-through wireframe of a multi-page prototype with four guided modules (prototype 2). These two prototypes underwent testing in the form of usability sessions that featured a convenience sample of CPL patrons. Within these usability sessions, participants were asked to give feedback on the ease of using, navigating, and understanding the content presented on the prototypes. Additionally, participants were asked to give an overall impression of the single-page prototype in comparison with its multi-page counterpart. These sessions were audio-recorded and included one facilitator and one observer responsible for noting participant body language during the session and helping when necessary. Panopto screen capture was also used to see how participants truly navigated the two prototypes. The usability testing sessions continued leading to the current “live” version of healthforallproject.org. This version as determined by our CPL participants best allows users to successfully find and understand clinical trials information on the website. It also contains answers to topics that patrons identified as being most important to them.

A final component of this research project was the evaluation of the Health for All web-based tool. Participants not already familiar with the research study, were asked to sign-up to take two surveys, one administered before and the other after the participants have taken part in a “Health for All: Real Talk Clinical Trials” online session. A total of 87 participants from Chicago Public Libraries in areas with underrepresented populations in clinical trials, were enrolled. Many of these participants identified as female (n = 35, 54%), with equal representation of age ranges between 18–70 years old. Most participants self-identified as Black/African American (n = 32, 52%), followed by White (n = 18, 29%), and Asian/Pacific Islander (n=12, 19%). Of those that selected White, approximately half identified as White with Hispanic/Latinx/Spanish origin (n =7). Many participants were college educated (n=37, 57%), and the remainder indicated that they had a high school diploma or some attendance at high school or college.

Before beginning the online session, most participants reported that they had never participated in a clinical trial (n =42, 65%). 56% of participants stated they would be “very likely” to participate in a clinical trial, with 39% “somewhat likely” to participate if offered. 95% of participants also said they would be “very likely” or “somewhat likely” to seek more information about clinical trials. After participating in the Health for All: Real Talk Clinical Trials online session, most participants (68%) said they would be “very likely” to participate in a clinical trial, followed by 32% “somewhat likely” to participate. Additionally, within the post-session survey, participants were asked, “If you were invited to participate in a clinical trial, would the Health for All website (healthforallproject.org) have answered all of your questions?” To this question, most participants (98%) answered “yes.”

Discussion

In this report, we propose two Center for Health Equity Transformation interventions, the Community Scientist Program and the Health for All: Real Talk Clinical Trials Library Project, as complementary models for future efforts to better engage systemically marginalized communities in research. The three gynecologic cancers (cervical, endometrial, and ovarian) reviewed in this report have some of the worst racial/ethnic disparities in morbidity and mortality, with Black women suffering the most across all three cancers. A factor identified as a major contributor to these disparities are knowledge gaps related to screening, treatment, and preventive measures. Exacerbating the persistence of these disparities is the existing divide between gynecologic cancer researchers and individuals belonging to these communities, such that findings from research conducted to better understand these cancers, do not make their way to those most impacted by these cancers, and the needs and preferences of the communities are not fully understood by the researchers. We summarize below the goals of our two interventions and implore gynecologic cancer researchers to explore community scientist programs and public libraries as avenues for improving information outreach on these cancers and for better community-engaged research to address and eventually eliminate gynecologic cancer disparities.

A goal of the Health for All: Real Talk Clinical Trials project is to inform people about clinical trials so that they may be more likely to participate in future clinical trials. Past research has shown that barriers to recruitment and eventual participation of underrepresented individuals in biomedical research include a deep distrust of biomedical research institutions. However, we found that people are willing to learn more about and participate in clinical trials, but there is often a lack of access to clear and accurate information. The work of this project has been aimed at contributing to a more diverse clinical trial participant pool by presenting clinical trial information in an easy-to-understand, approachable and user-friendly manner in public venues such as libraries. While it is still too early to know how many of our participants will go on to enroll in clinical trials, our participants share that they found the Health for All tool to be informative. This reaffirms libraries and collaborations with public libraries as avenues that can and should be explored for the dissemination of important health information. Specifically, within the realm of gynecologic cancer research, partnerships created with libraries can be aimed at using libraries as major centers to distribute information regarding cancer screening, HPV vaccinations, risk factors, and guideline treatment. Furthermore, as libraries are considered safe spaces within communities, they can also be used to recruit Black and Hispanic/Latina women in clinical trials so that they have equal access to the latest experimental cancer therapeutic interventions available.

Shifting focus from clinical trials to basic and translational research, the community scientist program discussed here aimed to establish direct, bidirectional avenues of connection between communities and cancer researchers working in basic and translational science. By facilitating opportunities for bidirectional connection between community stakeholders as community scientists and cancer center scientists, the community scientist program aims to (1) establish operating norms of how communities can truly bridge with basic and translational scientists and vice versa, (2) contribute to the community appropriateness and scientific rigor of research toward benefiting minoritized communities across the catchment area that bear the brunt of cancer disparities, and (3) build effective dissemination strategies that are more responsive to, and mindful of, the catchment area and cancer disparities.

With these aims in mind throughout the course of program meetings, community scientists and cancer center researchers alike expressed frustration with the chasm they feel exists particularly between basic and translational cancer research and communities most impacted by cancer disparities. Community scientist program participants also expressed, however, their keen interest in developing potential strategies to contribute to the elimination of this acknowledged disconnect and the importance of doing so among a collaborative group like that of the community scientist program – one that includes diverse representation across both communities and basic and translational research.

As our attention turns to contributing to the mitigation of gynecologic cancer disparities today, the sentiments shared during our community scientist program meetings hold value; while basic and translational research is often viewed as far removed from the lay public compared to its population or clinical counterparts, programs and interventions that facilitate direct engagement between basic and translational researchers who study gynecologic cancer and communities most impacted by such cancers are worth pursuing.