Health Equity and Health Disparities
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.
Community Engagement Strategy to Understand Cancer Disparities in Illinois
“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
- to develop a plan to engage diverse stakeholders in the development process of the plan
- 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:
- identify cancer-related problems, barriers, and gaps that Illinoisans experience
- identify solutions, facilitating factors, and strengths to address the problems
- 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.
Characteristics of Town Hall Participants
Hispanic, Spanish, or Latino origin
Black or African American
Race not reported
Caregiver for a cancer patient (current or past)
Government agency/Health department
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).
Characteristics of Focus Group Participants
Ever diagnosed with cancer
Current or past caregiver for a cancer patient
Current rural residence
|Age at cancer diagnosis||Number|
< 40 years of age
40-59 years of age
> 60 years of age
< 40 years of age
40-59 years of age
> 60 years of age
Hispanic, Spanish, or Latino origin
Black or African American
American Indian/Alaska Native
|Current health insurance coverage||Number|
Coverage through the Affordable Care Act
Other source of coverage
Uninsured, no coverage
|Preferred language for focus group||Number|
Geographic representation of focus group participants for the 2022-2027 Illinois Comprehensive Cancer Control Plan community engagement strategy
Factors that Contribute to Cancer Disparities among Illinoisans
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.
Social conditions and policies
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.
Lack of comprehensive health insurance system for all Illinoisans
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.
And even though the term is Affordable Care Act, the insurance, if you're paying it on your own –which I am right now – is not very affordable. (African American cancer survivor from Cook County, 60 years of age)
It's been said we don't have a health care system; we have a sick care system. And that's because people don't, and they're not encouraged, to seek out health care. They're encouraged to get better if they're sick. And only if they can afford it. (Non-Hispanic White cancer survivor from central Illinois, 57 years of age)
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.
My insurance is through the Affordable Care Act. When Illinois extended Medicaid to cover low-income individuals, I qualified. And I find having that as my insurance affects who I can see… I feel that the quality of health care I'm getting… because of my insurance is less. It isn’t as good. (Non-Hispanic White cancer survivor from central Illinois, 57 years of age)
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.
Some people don’t have access or are afraid, especially in the Black community and Brown communities. (African American male cancer survivor from Cook County, 57 years of age)
And I've heard from friends – in particular, friends who are not White, who do not feel like doctors trust or actually listen to them and validate what they're experiencing. (Non-Hispanic White cancer survivor from Cook County, 34 years of age)
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.
We also want people to understand that the financial help that they give us, from the state, in the hospitals and clinics is because it's a part of what we also pay in taxes as immigrants. Don't feel like they're giving you something for free or are doing you a favor. (Latina community member Cook County, 48 years of age)
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 quality 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.
[Access to a research institution] is literally a lifeline. You have access to clinical trials... and the response time is phenomenal if you're in a location that has that kind of infrastructure. But most… in this country do not live near a major research hospital. And I do not expect that we can be successful at treating cancer early, or even getting people treatment that they need, without the access. Access is everything. (African American cancer survivor from Cook County, 60 years of age)
Access to clinical trials
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.
I feel strongly that I am going to live and survive cancer because of 20 years of clinical trials that women were willing to endure. And I feel like I stand on the shoulders of a lot of women who did the clinical trials for... all the drugs that I’m now taking that are saving my life. So, I pray for those people every day and I pray for their families and the survivors of those women. When I was diagnosed, I volunteered to join a clinical trial.... As someone in cancer treatment, if we can contribute to the science of treatment, we can and we should. (Non-Hispanic White cancer survivor from rural, central Illinois, 55 years of age)
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.
At first, I was terrified… “Oh. I’m gonna be this guinea pig.” But I’ve been on it. I decided to go with the clinical trial, and I am so happy I did because it’s keeping me stable. And I’m lucky enough, I don’t have side effects. (White cancer survivor from suburban Cook County, 60 years of age)
I think [my participation in a clinical trial] would just depend upon the situation, what my health situation is, and what the details of the trial are, I would be willing to participate depending upon those things. But then again, I might not be willing to participate depending upon those things. (Non-Hispanic White cancer survivor from rural, southern Illinois, 48 years of age)
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.
It was a big issue as far as who was coming to them and asking [to participate in a clinical trial]... I mean, especially like individuals from African American communities. Who is asking me to be a participant? Because I don't necessarily trust everybody out here. (African American community member from Cook County, 37 years of age)
Access to patient navigation services
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.
But what would've been great, and hospitals have this but ours doesn't – it would be to have a patient navigator. I had friends who did have patient navigators and it just blew my mind. I mean, they basically take care of all that stuff for you, answer your questions. (Non-Hispanic White cancer survivor from central Illinois, 66 years of age)
And so, there are insurance companies that do have patient navigators… And there are hospitals that have patient navigators… But they're so few and far between. (African American cancer survivor from Cook County, 60 years of age)
Physical and Social Context
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.
Location, location, location
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.
There's been a lot of discussion about health care disparities, and I just called it ZIP code health care… Your ZIP code determines your access as well as the type of environment that you are living that injures your health. (African American cancer survivor from Cook County, 60 years of age)
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.
So, if you’re in a hard-to-reach region, why should you get third tier treatment? It’s an unequal distribution of medical care in the state and it has been for a very, very long time. (Non-Hispanic White cancer survivor from rural, central Illinois, 55 years of age)
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.
I live in a very rural part. There are farms, coal mines. And in my small community, I mean, there aren't a lot of people, but I don't know of anyone who has not had cancer in their family. It seems like almost every day it's like someone said, "Oh, did you know so-and-so down the road has cancer? This person has cancer.” (Non-Hispanic White caregiver from rural, southern Illinois, 48 years of age)
I think if one lives in an urban area, your air quality probably isn’t very good. So, that probably has a lot to do with cancer diagnoses. (Non-Hispanic White cancer survivor from Cook County, 58 years of age)
The digital divide and telehealth
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.
I will say, for my mother-in-law who’s 73, during COVID…, and because of technology – she wasn’t technology savvy – she was discouraged and didn’t do it. So, she went through a lot of pain as a result of that was the only thing that they offered her. So, I just imagine that community who may not be comfortable with technology and having to do to that would struggle. (African American cancer survivor and caregiver from central Illinois, 49 years of age)
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.
I'm going to share someone else's story… She has a mental health issue and was constantly, again because of transportation, was a no show or would arrive at her appointments late and then couldn't be seen. And she loves telehealth because she doesn't have to rely on anyone else… She hopes that they always keep that because it's so successful for her. (African American cancer caregiver from rural, central Illinois, 65 years of age)
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.
I mean, not everyone has access to a vehicle… Quite often, the medical profession doesn't consider that… And in a way, it's like blaming the victim because I don't have access to what I need to get there… Access for me is difficult. And somehow, they never seem to ask those questions. You know, what can we do to help you get here? Do you need a ride? Something like that. None of that becomes a conversation. (African American cancer survivor and caregiver from central Illinois, 49 years of age)
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.
For the ladies that cannot afford to get their mammograms, the [name of county health department] [has] grants. Once they get their hands on that money, then it’s our job to go out there and share it in those populations, then say, “Hey, what you need to do is you need to contact A, B, and C, and there’s money to cover your mammogram costs and any other type of your regular annual checkups that you have...” It's gonna be up to people like us that… approach our legislatures because that’s where the money is…and how important it is that they provide these grants and these resources for these communities. We can’t have our communities dying for lack of knowledge. (African American caregiver from central Illinois, 72 years of age)
Fear of cancer in communities
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.
I think part of it is the fear of the expense of medical care, not understanding it –having insurance or not, understanding insurance, and that financial fear. (Asian cancer survivor and caregiver from Cook County, 63 years of age)
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.
For me it’s a partnership, and if you’re going to judge or not be able to listen and communicate and acknowledge that I have value in my own health care, then it’s not a relationship that’s going to work for me. (Non-Hispanic White caregiver from southern Illinois, 39 years of age)
You… need to establish a relationship with a primary care doc, because they’re gonna be your advocate and your referral system and with everything. So, I’m very blessed that I had a great family doc that I’ve been able to lean on. (Non-Hispanic White cancer survivor from northern Illinois, 44 years of age)
My doctors lead the way in [influencing my decisions to get screened for different cancers]... But I really trust my – god, I'm gonna get emotional. I trust my doctors so much…. They've done so much for me, and I think that the trusting relationship we've had has been the key. So, I pay attention to my body… I'm blessed with really good doctors, and they lead the way, and I let them. (Non-Hispanic White cancer survivor from central Illinois, 57 years of age)
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.
Supplemental patient-provider relationship and communication quotes
It's all about finding – I'm connected with the LGBTQ community, and just finding an open and affirming provider that's not going to have bias about your sexual orientation is like a whole extra step and can be complicated for people to overcome and make sure that they feel safe with a doctor. (Non-Hispanic White caregiver from southern Illinois, 39 years of age)
I also feel like there is also that demeanor especially for people of color – sorry to bring up race issues – but I feel like there is a demeanor that doctors have, especially towards people of color like, “You don’t know any better.” Like, they don’t want to listen to you. It’s like, “Man, are you really a doctor? Why are you treating me like I’m trash?”...Talk to me because I’m a human being. Not a second-class human being but a human being just like you.” So, unfortunately, if you are Black, that’s something that you have to live with. You have to educate yourself like [name of other focus group participant] said, before you go in, know your talking points. Stick to your talking points. (African American community member from rural southern Illinois, 40 years of age)
Having a conversation with the doctor may not be as understandable, and people don’t know how to continue to say, “I don’t understand” or “tell me in a different way.” So, it’s also a point of literacy and understanding. So, the doctor went to medical school and he or she is an expert. But if they can’t deliver that message and that information in a way that’s understandable, then they haven’t done a good job. And so, I may sit in the office, I may get lots of information which is good pertinent information. But if I don’t understand it, I don’t have anything. (African American cancer survivor and caregiver from central Illinois, 49 years of age)
I'm not usually worried about a doctor believing me or following up on if I say something and they're like, "No, we think you're fine." I feel very comfortable pressing and being like, "Well, nope. I disagree." And I'm still reluctant sometimes to go to the doctor, but once I'm there I feel comfortable advocating. And I also feel like my doctors listen to me. (Non-Hispanic White cancer survivor from Cook County, 34 years of age)
I was sent to a neurosurgeon… And they started talking around me. I'm sitting there and these two doctors are talking like I'm not in the room. And they said, "We think she should do this," and I'm thinking, "I'm here. Somebody wanna say something to me? I could answer a question." And so, my response to that was to tell my doctor that I wasn't going to do it. And I canceled all future appointments. And I put a note in the file. "When you have somebody in the room with you, you don't talk over them. I'm not a simpleton. But more importantly, I'm a patient.” (African American cancer survivor from Cook County, 60 years of age)
I went to a doctor to talk about some issues… and she didn’t wanna listen to me… She told me that she knew what was wrong with me, she didn’t have to listen to me. And I asked her, “How did you know?” And she said, “Because I’ve been to school for five years.” And I’m like, “I’ve been in my body for 40 years. So, how can you know me better than me?” (African American caregiver from rural southern Illinois, 40 years of age)
Individual Demographics, Risk Factors, and Biologic Responses and Pathways
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.
Health insurance plays such a huge role in cancer screening… When you end up losing your insurance, you have no other choice but to then start neglected your health… My oncologist appointments are only covered because I'm under a cancer study and they're helping me with those, and I can only go to the annual ones. I can't go if I have a complaint or anything. I can't go in… The low income, we are definitely, sadly affected by the fact that we have to neglect our health (Non-Hispanic White cancer survivor and caregiver from Central Illinois, 57 years of age).
A lot of people I know of lower income, of no health care or can’t afford it, are afraid if they go get screened, they’re gonna be in debt because of the bills that are gonna be coming their way. (African American male cancer survivor from Cook County, 57 years of age)
You know, I’m blessed to have a husband, and I’ve told him many times that were it not for our insurance coverage, I don’t know where I’d be. Ovarian cancer is a very expensive treatment. CT scans are $12,000 sometimes. I just don’t know how people could do it if they were not covered. I really don’t. (Latina cancer survivor and caregiver from Cook County, 48 years of age)
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.
There’s a lot of people who have the thought that... [name of public hospital] isn’t good because that’s where all of the immigrants go, but... people who don’t have resources to go to another hospital go there, and that’s why they take a long time. Personally, I can say that years ago it was like that… They gave me an ultrasound [appointment] in six months. When I got to six months, I didn’t have the pain anymore. (Latina community member from Cook County, 48 years of age)
Biologic Responses and Pathways
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.
When I did my genetic testing and we did the whole history of the family, everyone’s like, “Oh, can I get a copy of that?” So, having your family history and medical history, I should say, was very helpful for me and to be able to give it to other family members as well just so they could know what the background is for medical. Because I have a lot of cousins and they’re like, “Wait, can I have that?” Because if we don’t talk about it, they don’t know about it. (Non-Hispanic White cancer survivor from Cook County, 36 years of age)
Once we found out there was a genetic mutation in the family – so now, one of my cousins who’s younger than me, she actually got screened for it and so she’s talking to a specialist to see what her options are so that she has more of a choice with it. (Non-Hispanic White cancer survivor from rural southern Illinois, 36 years of age)
Proposed Recommendations and Funding Priorities to Improve the Health of Illinoisans across the Cancer Continuum
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.
Policy and systems level recommendations
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.
I just think about being able to go into a clinic and get a COVID vaccine for free. Why is it...? Why aren’t more treatments available like that, regardless of what your income level is and what your financial situation is? I just think that the health care system in this country has a lot to be desired. (Non-Hispanic White cancer survivor and caregiver from suburban Cook County, 60 years of age)
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:
Why can’t we just make these services affordable to everybody? If they can’t afford them, let’s find a way of paying for those services so that we can, in the long run, save more lives. (African American community member from rural southern Illinois, 40 years of age)
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.
I think when it comes to the institutions… there’s probably a handful [of well-known health care institutions] … and it could be that those systems have figured it out… but why can’t everybody else figure it out? Why is a really big teaching hospital… not doing what [name of hospital] doing?... Why can’t all of these institutions offer the same?... Everyone at McDonald’s knows how to flip a hamburger the same way. Why can’t everyone who does intake at a hospital, or a nurse navigator have the same kinda playbook of how to treat somebody? (Non-Hispanic White cancer survivor from central Illinois, 49 years of age)
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.
But what would've been great, and hospitals have this but ours doesn't –it would be to have a patient navigator. I had friends who did have patient navigators and it just blew my mind. I mean, they basically take care of all that stuff for you, answer your questions. And pretty much on our own to figure things out, I had to have homecare. And the poor social worker, she's just one person. So, she ended up getting us a list of possibilities. We called them all – my family – and just nothing clicked. And then, we finally hooked up with a company, business, that could do it for me. And I don't know what I would've done without it because my family couldn't do that. So, I really wish there were more patient navigators. (Non-Hispanic White cancer survivor from central Illinois, 66 years of age).
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.
...we need to do a better job at teaching… doctors [that] are in med school… how to communicate effectively...and empathetically because some of these doctors – bam bam bam – I’m out of here. It’s like, “I cannot be bothered with questions. You have any questions, talk to my nurse. They’ll let me know what you need.” There is that attitude like, “I’m up here and you are down here, and I will just look on top of your head and just walk by you.” So, I feel like the doctors need to get to your level, eye on eye, talk to you as an individual, especially and adult individual, where you are both respecting one another but still creating that space of respect… Doctors need to learn how to communicate effectively with their patients. (African American community member from rural southern Illinois, 40 years of age)
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.
If you have cancer… sometimes [the specialists] … don't relay the information to the primary care physician or they don't have the kind of communication that needs to occur… I think that then affects the care because the specialist may tell me something, and if it's documented when I go to my primary care, then I can have the conversation with him or her, and that can provide a different lens from which to view. And that doesn't happen even with the electronic record. (African American cancer survivor and caregiver from central Illinois, 49 years of age)
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.
I think part of it is, too – with our minority communities, is that it's almost as if we have to plant patient navigators in the community – or the churches or community groups – who speak the language. Not saying – the language as far as community, and nuance, and beliefs, and understand the community to help them trust the medical system. (Asian cancer survivor and caregiver from Cook County, 63 years of age)
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.
I think there's a lack of knowledge about when to get screened... I was surprised that, as a cancer survivor, how little I knew about other cancers. I was just floored… if I don't know about other cancers and screening timing, how is the general population going to know?…. There's gotta be a way to present it to different communities and different age groups where it's not as scary. (Asian cancer survivor and caregiver from Cook County, 63 years of age)
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
...at the main clinics and hospitals and midsize areas, it’s hit or miss whether an oncologist and their nurses are familiar with social/emotional support. And I think if there was more established connection and funding for that social work/counseling side, to refer patients to that, if they wanted, would be great. (Non-Hispanic White male cancer survivors from central Illinois, 35 years of age)
There are hospitals that have patient navigators… but they're so few and far between… That's the biggest problem... there was some discussion in the creation of the Affordable Care Act about creating a community health plan that could fund that. And, of course, it never got to fruition because they continued to eat away at it. But a lot of people recognized that it's not just the cancer but it's across the board. And the question is, who funds the patient navigators. (African American cancer survivor from Cook County, 60 years of age)
Cancer prevention efforts and research
There’s a lot of emphasis on screening and catching it [cancer] early, which is obviously good, but… there needs to be a lot more emphasis on prevention and what actually causes cancer. (Non-Hispanic White cancer survivor from northern Illinois, 55 years of age)
Distribution of funds to different types of cancers
When men start getting ovarian cancer, that’s when the research money will come up. That’s what happened with breast cancer… Another interesting thing… how money is spent on different types of cancers. (Non-Hispanic White cancer survivor from Cook County, 81 years of age)
Cancer in the Era of COVID-19
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.
COVID-19 has unveiled long-standing health inequalities
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.
There’s been… groups in the history of the United States that have been specifically mistreated or failed by the medical system… We’re seeing that right now even with certain people groups not feeling safe to go get COVID testing or treatment or vaccines because of the history of how they’ve been treated. (Non-Hispanic White cancer survivor from central Illinois, 29 years of age)
One of the few good things about the COVID discussion is that health equity issues are finally coming into discussion by a broader audience. I think a lot of people weren't even aware that living in a rural community could impact the quality of your life, the quality of your health, the length of your life. And I think that's one of the few blessings… So, as terrible as COVID has been, I'm grateful that this is the discussion that's starting to occur. (Asian cancer survivor and caregiver from Cook County, 63 years of age)
Hesitation and fear to engage with health systems
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:
I think for people who don't already have a diagnosis, there might have been some pause on [engaging in screenings], "Should I go out, should I not? Is this really something to be concerned about? Is it not something to be concerned about? Should I wait it out? Should I not?" So, I think there was a lot in the very beginning, a lot of confusion on what you can and cannot do. (Non-Hispanic White caregiver from suburban Cook County, 27 years of age)
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.
I was supposed to get a mammogram…but unfortunately, I got sick with COVID-19, and I had a hard time with it. I had a very hard time. And, I was supposed to have the appointment at the beginning of – at the end of 2020… So, honestly, I canceled it because I didn't feel safe… Fortunately, I got the second vaccine, so I feel safer to be able to go to a clinic and do my checkup. So, I preferred to just not go and hold off here and just ask God that when I go to get the tests, everything will come out okay. (Latina community member from Cook County, 48 years of age)
Medical prioritization of COVID-19 efforts
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.
I think they estimate that there’s been a decrease in screening by up to 90% in some areas, like, take a mammogram or prostate cancer. I don’t know if that’s right or not…. So, I think COVID’s had a huge impact and I think oncologists are expecting a huge spike in the number of cases because we will have had so many undetected cases. It’ll be a pity. (Non-Hispanic White cancer survivor from rural central Illinois, 55 years of age)
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.
I spoke to two people who recently were diagnosed with breast cancer, and I think the most they've gotten is one appointment… Because of COVID, more than anything, there are backups on the appointments. (Latina community member from Cook County, 48 years of age)
Supplemental Focus Group Quotes about COVID-19
Impact of COVID-19 on cancer screenings
I think…when the pandemic began, exactly a year ago, a lot of appointments were canceled. Even appointments that were for cancer exams… They weren’t allowing people into the hospitals unless it was an emergency. The hospitals started getting filled with people for COVID-19, so they gave priority to the pandemic. (Latina community member Cook County, 48 years of age)
In the communities that I work in with health advocacy, it’s… valid [excuses for not engaging in cancer screening] such as, “I no longer have insurance. Because of COVID, I got laid off,” or “Now, my anxiety –or I’m suffering from mental health, and a screening is not priority right now,” or… “I just forgot because so many other things are going on in the world.” It’s not just, “I was busy at work and forgot to get my screening,” or “it’s a myth, that I don’t believe screenings work.” COVID has made so many other reasons for people to not get screened. (African American cancer survivor and caregiver from central Illinois, 49 years of age)
Impact of COVID-19 on late-stage diagnoses
I don't know that there's going to be a way to quantify it, but I’m terrified of the number of cancer cases that are caught in later stages as a result of not going in during COVID. (Non-Hispanic White cancer survivor from Cook County, 34 years of age)
African Americans had disproportionally higher COVID-19 mortality rates
I live in a very, very, very Black town, very Black part of Chicago… We had among the highest COVID incidence and cases… [and] mortality. And I think that the myriad of systematic influences that allow that, also are the same persistent for cancer. (African American community member from Cook County, 37 years of age)
Telehealth is here to stay
When we are over COVID and… back to somewhat semblance of normalcy, I think telehealth is here to stay… It does provide, particularly those people out in the boondocks, or those who don’t have... transportation – it does give you an access to health care… I don’t particularly like it. I prefer face-to-face, but that’s just me. (Non-Hispanic White cancer survivor, central Illinois, 88 years of age)
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.