In the previous section, the populations at highest risk for cancer or cancer mortality were reviewed, as well as the highest risk groups for priority cancers. In this section, health equity and how health disparities impact cancer screening, early detection, and treatment are discussed.

All Illinoisans deserve to live long, healthy lives, free of modifiable differences in health status and outcomes.

Health inequities affect everyone. Disparities in health status exist between many population groups, with the greatest disparities found between people of different racial or ethnic groups, and between people of different socioeconomic statuses. Significant racial/ethnic and income disparities are observed when examining the rates of illnesses and conditions, such as diabetes, heart disease, depression, lung and breast cancer, and infant mortality. Interventions to reduce health inequities can improve the health of all communities. Health inequities exist for the lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities.

Health disparities are a particular type of health differences closely linked with social, economic, and/or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identify; geographical location; or other characteristics historically linked to discrimination or to exclusion.

“Cancer affects everyone but not everyone equally” and this extends to communities in Illinois. The Illinois Comprehensive Cancer Control Program (ICCCP), in collaboration with the University of Illinois Cancer Center’s Community Engagement and Health Equity (CEHE) office, implemented a community engagement strategy for the 2022-2027 Illinois Comprehensive Cancer Control Plan. The overall goals of the collaboration were

1. to develop a plan to engage diverse stakeholders in the development process of the plan
2. to receive community feedback on cancer disparities and needs in Illinois

Enlisting the participation of stakeholders from the community ensures that the 2022-2027 plan reflects the expertise, voices, and priorities of Illinoisans who are directly impacted by cancer, including cancer patients, survivors, and caregivers. The community engagement strategy included a statewide town hall, as well as eight focus groups. Throughout the development of the plan, information from the community engagement efforts was continuously discussed and reviewed with the ICP and the Prevention; Screening and Early Detection; and Diagnosis, Treatment, and Survivorship work groups.

On January 26, 2021, CEHE hosted a statewide town hall followed by eight focus groups in March and April 2021. The objectives of the town hall and focus groups were to:

1. identify cancer-related problems, barriers, and gaps that Illinoisans experience
2. identify solutions, facilitating factors, and strengths to address the problems
3. propose recommendations based on findings

The approach, development, and analysis of the town hall and the focus groups were guided by the Model for Analysis of Population Health and Health Disparities, the Centers for Disease Control and Prevention’s Community Health Assessment and Group Evaluation (CHANGE) Action Guide, and the Community Tool Box. The town hall facilitator guide and the semi-structured focus group guide included questions about biologic responses and pathways (genetic factors), individual demographics and risk factors (socioeconomic status and health behaviors), the social and physical context (environment, social relations, social norms, and beliefs), and fundamental causes (policy, health care system, and discrimination). This project (Protocol #2020-1552) received a formal Determination of Quality Improvement status according to University of Illinois at Chicago institutional research policy.

The virtual town hall was open to all interested individuals. A registration link was sent out via IDPH’s, the ICP’s, and CEHE’s partner and stakeholder networks. During the 90-minute virtual town hall and in breakout rooms, participants discussed how cancer impacts their life, strategies to improve cancer outcomes in Illinois, and what the state can do to improve cancer disparities. The town hall and its breakout rooms were hosted by a facilitator and a note taker. Immediately following the town hall, notes were composed to align with the facilitator guide. The notes were reviewed and then organized by the topic areas in which they were discussed with attendees.

As a follow-up to the town hall, CEHE hosted eight focus groups to delve deeper into themes about health equity and cancer disparities. Interested individuals were asked to complete a basic demographic form that included questions about geographic residence in Illinois, whether they were a cancer survivor and/or caregiver, insurance status, and race and ethnicity. Participants were selected using purposive sampling methods to maximize group heterogeneity and to ensure a broad group of individuals were represented in the focus groups. Three general population focus groups were held, as well as focus groups specifically for rural residents, survivors, young survivors, caregivers, and Spanish speakers. The focus groups, held both during the week and on weekends, were audio-recorded and ranged between 75-98 minutes (M= 83 minutes) and had on average seven participants (range of 5 to 10 participants). Participants received a $40 gift card to thank them for their time. The focus groups were transcribed professionally, checked for accuracy, and de-identified prior to analysis. The analytic team used content analysis procedures and developed a codebook to facilitate the identification of themes and subthemes. The final codebook consisted of 58 codes. Finally, the town hall notes and focus group findings were synthesized and are presented together below.

The major themes from the town hall and focus groups are presented to first describe the factors that contribute to cancer disparities among Illinoisans, aligning with the Model for Analysis of Population Health and Health Disparities framework (fundamental causes, the physical and social context, and individual demographic and risk factors), followed by proposed solutions, recommendations, and priorities across the cancer continuum. Finally, a brief section on the impact of COVID-19 on cancer is presented. Exemplary quotes are included in the results text and supplemental tables will present additional sample quotes.

The town hall had a total of 62 participants. Town hall participants were asked to report their affiliations and could select as many categories as they felt were applicable. About a third (36%) of participants reported being an academic affiliate, 16% reported they were from a community-based organization, and 13% were from a hospital or clinical setting. About 13% reported being a cancer survivor and 10% reported they were a current or past caregiver of a cancer patient.

^{Town hall participants asked to select all affiliations that applied}

The eight focus groups had 53 participants from Illinois. About 62% reported being a cancer survivor and 47% were a current or past caregiver of a cancer patient. Most (94%) participants were female, and on average 52 years of age. About 15% reported their ethnicity as Hispanic, Spanish, or Latino origin, and nearly a quarter (25%) reported their race as Black or African American. Regarding current health insurance coverage, about a quarter (27%) were covered by Medicare, Medicaid, or through the Affordable Care Act (ACA) marketplace, and 6% were uninsured. Finally, regarding geographic representation, about 26% of participants were rural residents, and 16 of Illinois’s 102 counties were represented in at least one of the focus groups (Figure 20).

Town hall and focus group participants described how fundamental causes, the physical and social context, individual demographic and risk factors, and biologic responses and pathways contributed to disparities across the cancer continuum for Illinoisans and in line with the Model for Analysis of Population Health and Health Disparities framework. The sections below describe each of the factors in greater depth.

Participants described several fundamental causes, those distal determinants of health that include population social conditions, policies that affect social conditions, and the policymaking bodies that influence or determine them that contribute to disparate health.

Overall, the lack of a comprehensive health insurance system for all and discrimination were identified as being the primary social conditions and policies that contributed to cancer disparities across the cancer continuum.

Although Illinois was a Medicaid expansion state through the Patient Protection and ACA, a significant segment of the population remains uninsured or underinsured (unaffordable out-of-pocket costs and deductibles). The costs of cancer screenings and preventative care were often too expensive for these individuals, and thus were at times avoided. One cancer survivor noted the unaffordability of their ACA plan.

Further, it was noted that Medicaid managed care organizations (MCOs) are not comprehensive in terms of geographic coverage for all communities. So, some communities struggle to access cancer care, even when insured. One cancer survivor discussed having clinical options because of their insurance.

Discrimination, both within the historical context as well as within the medical system, was discussed as a major contributor to cancer disparities. Specially, a lack of trust between patients and providers was perceived to be a significant issue that impacted engagement with the health system.

Relatedly, there were conversations about how people of color and undocumented populations specifically may not engage with the health system due to internalized stigma. One person described how people in their community avoid safety net screening programs.

A lack of access to health systems, services, and quality care were described as major drivers of cancer disparities in Illinois. Participants expressed the belief that not all health systems provide equivalent standards of care and groups with lower socioeconomic status may be receiving worse care.

Access to care, although important, is not sufficient to address health disparities if the care is not of high quality. Specially, it was noted that access to cancer centers and research institutions was important.

Clinical trial research leads to exciting and important discoveries for addressing cancer, especially around screening and treatments, yet not everyone is able to access them. One cancer survivor talked about how they felt their survival was a result of previous clinical trials.

However, even for those with access to clinical trials, the decision to participate was not always an easy one to make. People discussed weighing the potential risks and benefits of participating, as well as potential burdens, like travel and time, involved with being part of a clinical trial. For some, participating in a clinical trial was seen as a last-ditch effort to address their cancer.

African American cancer patients, who have traditionally been excluded from clinical trials research, may also be hesitant to participate in clinical trials research, in part due to historical medical mistreatment.

Another important access issue, especially for those undergoing diagnostic and treatment procedures, is related to patient navigation services. Patient navigators were viewed as an essential member of the patient care team and can improve and enhance patients’ experiences throughout the cancer continuum by coordinating care, offering support and education, and identifying resources, yet they are not available universally or equitably.

The physical and social contexts are intermediate factors through which the distal effects of fundamental factors are experienced and impact cancer disparities. Participants described how their community’s physical and social contexts were important determinants of health and contributors to health disparities.

Abundant discussions were held on the importance of place and where one lives and how this determines health. Specifically, environmental hazards, internet access and the digital divide, transportation, and food insecurity were discussed.

Where a person lives impacts their access to facilities and to resources, to quality of care, and their ability to support their overall health and cancer-care needs. One person talked about the importance of place in determining health.

Discussions were held specifically related to the challenges faced by rural communities in Illinois, and the fact that they included many aging individuals as well as those of lower socioeconomic status. Some felt that rural populations were more likely to receive substandard care.

Living in an urban area, on the other hand, was sometimes described as a barrier, but at other times as an asset to addressing cancer disparities. For example, some urban areas are medically underserved, including communities on the South Side of Chicago. During the town hall, people discussed the closure of a Chicago hospital, which provided cancer treatment to a high-risk population. As a result, patients are having to travel far outside their neighborhood for treatment which may be difficult depending on resources they have available. Conversely, people discussed how the advantages of living in in an urban area. In some urban areas, there is easy access to resources, like patient/nurse navigators, community and support services, and community health centers.

Both rural and urban communities discussed their risk of exposure to carcinogens that affect the air, food, or water sources. The suspected sources of the environmental hazards differed between rural and urban populations, wherein farms and coal mines were identified by rural residents and factories and other waste-producing companies were identified by urban residents.

Participants made a recognition that the digital divide is a contributor to cancer disparities. Although telehealth has opened the door of opportunity and is allowing patients a way to connect with their health care provider virtually, many communities still do not have internet service nor know how to use technology. Further, this limits opportunities to engage with online education and resources. Cost was noted as a major barrier, specifically for rural residents. The digital divide has perhaps widened during the COVID-19 pandemic, when people have had to rely on telehealth for their care. Because many people are no longer physically attending appointments, they have not been able to be screened or receive treatment. This barrier is especially impactful in the older population, where many of the elderly do not know how to operate technological devices or connect virtually with providers.

While telehealth does not offer the same experiences or clinical services as in-person visits, some welcomed its availability. Telehealth eliminated travel times and costs, allowed for more patient-provider interaction.

Some people have cars and get around easily, some use public transportation, and some bike or walk for care, while others rely on family and friends. Rural, suburban, and urban communities experience transportation barriers, which makes it difficult to navigate appointments, attend support groups, buy healthy food, and go to health facilities for exercise. One person described their frustration in that this was a barrier that was not discussed enough with health care providers.

In rural and suburban areas, public and private transportation and ride share options are limited. Contrarily, urban areas generally have greater walkability, access to public transportation, ride sharing options, and resources. However, within cities, there are barriers to public transportation in high crime areas. Public transportation can also be challenging to neighborhoods in urban areas that have limited and changing bus routes based on time or other outside factors.

In high need communities, food deserts, and/or food swamps have a negative impact on one’s overall health. Food deserts greatly impact cancer rate, treatment, and survival. In these neighborhoods there is a lack of affordable, healthy foods, and a surplus of processed, unhealthy, fast food. Food pantries are a viable option to address this barrier, but pantries come with a certain stigma that can sometimes deter patients who could benefit from using them.

The social context includes community and neighborhood demographic characteristics, such as community poverty, education, and income levels, residential segregation, as well as social networks and norms. Participants discussed a sense that community organizations are struggling to reach out and connect with other organizations and community members to address health equity and create awareness of existing resources. One person described the availability of funds and programs for cancer screening in their community, but that corresponding outreach need to accompany programs for it to reach those who need it most.

Many communities fear the word “cancer” and noted it invokes negative emotions and feelings of “death, fear, stress, and the unknown.” The “unknown” that participants talk about is not limited to the person diagnosed with cancer’s state of health, but other factors: how to navigate insurance, what to expect in treatment, the future, finances, family, etc. This anxiety of the unknown is further amplified in undocumented communities because of lack of resources available.

Despite this fear, participants also discussed how cancer can also be associated with opportunities, especially related to improving treatments and continued learning.

The impact of patient-providers relationships across the cancer continuum were discussed extensively. First, participants identified essential elements of patient-provider relationships - humane and compassionate care, trust, and communication – and a need to establish a medical home.

Participants discussed a lack of effective communication between patients and health care providers as a major barrier to achieving quality relationships. They attributed this to a multitude of factors, including providers’ implicit biases and lack of cultural cognizance, patient literacy levels, and communication skills. People felt that some providers make assumptions based on the culture, appearance, or financial status of the patient. Communication skills are essential for both patients and providers, so that patients can better advocate for themselves and their loved ones, and so providers can deliver messages in appropriate, understandable fashion.

Demographics, risk factors, and biological responses and pathways are proximal, individual-level determinants of health. Overall, town hall and focus group attendees had minimal discussion of individual-level risk factors and health behaviors. When they were mentioned, it was typically in relation to the different social and physical community contexts that shape behavior, such as access to resources and safety and engagement in physical activity. While individual demographics and risk factors, especially insurance status and immigration status, were described as contributing to cancer disparities across the continuum among Illinoisans, they were not perceived to be the primary drivers of the disparities. Concerning biologic responses and pathways, attendees had conversations about knowing one’s family health and cancer history.

Overall, participants noted concerns that being uninsured or underinsured means neglecting your health simply because care is unaffordable otherwise. For example, people discussed the inability to get screened for cancer without insurance, hesitation to engage with screening in the event because if cancer is detected, the care will be unaffordable, and the exorbitant cost of treatment.

In conversations concerning those in undocumented communities, participants noted the perception that they are less likely to utilize resources or seek medical care. For some, this may be due to fear of engaging with a health system, a lack of knowledge about where to receive care, or having to deal with long wait times for appointments.

Participants discussed the importance of knowing their family history to assess their person cancer risk. Once cancer was diagnosed in a family, this opened up conversation opportunities. This also prompted other family members to engage in genetic testing.

During the town hall and focus groups, participants were asked to recommend and prioritize strategies and funding to address cancer disparities in Illinois. These strategies were organized and presented by policy and systems, clinical, community, and individual-level recommendations. These recommendations span the entire cancer care continuum, from with prevention and continuing through survivorship.

Overall, there was a strong sense that there should be continued advocacy, from policy makers, health care systems, providers, patients, and community members to ensure that all those who need health care receive it, irrespective of cost. One person described the ease of getting a COVID-19 vaccine at no cost and wondered why the receipt of cancer treatment was not free.

Relatedly, the need for more affordable cancer screening for early detection and genetic counseling as prevention measures to improving health disparities was discussed often. One person stated:

At the health systems level, participants recommended a need for building trust and ensuring quality, standardized care for all. Health care organizations can enhance diversity among providers and recruit oncologists of color that mirror the communities they serve. This is especially important as there have been tremendous shifts in the health care landscape in terms of health care system closures, consolidations, and mergers. It is essential to set the same standard of care for all hospitals/cancer centers to ensure that all patients receive the same care no matter where they go for screening or where they receive treatment.

Several recommendations were suggested to address clinical-level factors that contribute to health disparities. These included access to patient navigation, improved patient provider communication, and provider trainings.

It was clear that those who had access to patient navigation resources fared better in traversing treatment and survivorship. People discussed how important it was for everyone to have access to this clinical resource, and the importance of including information about counseling/emotional support and financial resources. Patient navigators can help to navigate the health care system and multilingual navigators are especially important. Also, navigation should include a billing advocate or interpreter that helps patients understand their coverage. One person compared their experience of not have a patient navigator to those of their friends, who did have access.

When patients and providers communicate effectively, patients’ fears and uncertainties are addressed by care teams and providers can start to build trust in marginalized communities they serve. Participants talked about the need for communication to be bi-directional, respectful, and empathetic, and the importance of treating all patients equally, regardless of race, immigration status, sexual orientation, and/or socioeconomic status. One person described the need for provider education concerning communication.

In addition to the recommendation for effective communication between patients and providers, there is a need for primary care providers, specialists, and care teams to communicate better.

Health care professionals should undergo additional training to address cultural competency. Participants recommended that these trainings should raise awareness among providers about the need to be understanding of their patients’ preferences, even if they differ from their own. For example, in some cultures, women prefer female only providers, or make health decisions based on family input. If providers are better equipped to serve patients of diverse backgrounds, they can provide culturally appropriate resources, services for undocumented individuals, and more evidence-based interventions. Providers should understand communities they serve and its culture around cancer.

Community organizations, members, and health care providers can come together to address cancer disparity issues in Illinois. Specific recommendations included increased access to community navigators, ensuring that transportation needs are met for both rural and urban communities, and addressing food insecurity by establishing food depositories throughout the state.

It was recommended that cancer patients and survivors, as well as those engaging in cancer screenings, have access to community navigators. Because navigators are embedded in their communities, they are aware of the cancer-related resources and services. They can also help health care professionals understand the community’s needs and help to create linkages to community resources. A variety of different disciplines can provide navigation services, including community health workers and health promotors.

At the individual-level, the need to increase awareness and education opportunities about cancer among communities was a top recommendation among town hall and focus group participants. Specific topics of education included prevention/risk reduction, programs and resources available within a community, the existence of disparities and their impact, navigating the health care system, treatment options, including getting a second opinion, what to expect during treatment, and participation in clinical trials. Additionally, patients should be given information, so they are better equipped to ask questions and advocate for themselves. One cancer survivor talked specifically about the need for more individuals to be aware of screening guidelines.

Participants shared their thoughts and ideas on how funds should be prioritized to address cancer in Illinois. First, it was noted that community organizations doing collaborative work should be prioritized if addressing cancer disparities, especially around screening, should be prioritized for funding. People also stated that cancer prevention should be kept in mind as the ultimate goal for funding priorities. There was a concern that COVID-19 was diverting available dollars and resources that had previously been allocated for cancer. Additional information about specific activities that were discussed and recommended for funding are presented below.

Social/emotional/educational support and patient navigation

Cancer prevention efforts and research

Distribution of funds to different types of cancers

Given the timing of the community engagement efforts, it is not surprising that the topic of COVID-19 was discussed repeatedly, and not only in relation to the cancer continuum. These conversations included discussions of health equity, as well as the fear and uncertainty surrounding COVID-19 as it overtook the U.S. health system. These conversations included discussions of health equity. Supplemental quotes about COVID-19 are included at the end of this section.

On one hand, the global pandemic exacerbated health inequities and disparities, especially among racial and ethnic minority groups, rural residents, and people in lower socioeconomic standing. But on the other hand, as COVID-19 unveiled these long-standing health inequalities, it presented an opportunity for people to have conversations about that may not have occurred otherwise.

Most certainly, COVID-19 affected engagement in cancer screenings. For some, the fear of contracting COVID-19 outweighed the benefits of engaging in non-cancer screenings. Additionally, the shifting public health guidance was confusing for some. One person stated:

Others that did contract COVID-19 delayed their engagement in cancer screenings. One person spoke of their experiences and their preferences to wait until they were vaccinated against COVID-19 to return to a clinical setting for a mammogram.

In addition to individuals’ hesitations to engage with screenings, many health systems paused their screening appointments to prioritize their COVID-19 response efforts. People spoke of cancelled and backlog appointments for screenings and how this may translate into missed diagnoses. During the rural focus group, a participant described a huge decrease in screenings.

In addition to a pauses, delays, and cancellations of appointments for screen-able cancers, those individuals undergoing diagnostic and treatment procedures also experienced service interruptions. One person described challenges that recently diagnosed breast cancer patients experienced.

The results of the community engagement strategy for the 2022-2027 Illinois Comprehensive Cancer Control Plan indicate that Illinoisans experience disparities across the cancer continuum. These disparities are a result of multilevel determinants of health, and include fundamental factors, like policies and social conditions; intermediate factors, including physical and social contexts; and proximate factors, such as individual demographics and risk factors. Participants from the town hall and focus groups proposed a number of policies, clinical, community, and individual-level recommendations to address the disparities. These recommendations should be considered by stakeholders, including community organizations, providers and oncologists, policy makers, and researchers, who are concerned with eliminating cancer disparities in Illinois. Undoubtedly, eliminating cancer disparities in Illinois will be a challenge, especially considering the COVID-19 pandemic. However, Illinois has an abundance of resources and assets to address this challenge, as well as a dedicated group of stakeholders who continue to work and advocate for the health of all Illinoisans.