Advancing health equity through the National Comprehensive Cancer Control Program

Abstract

Achieving health equity requires addressing social determinants of health. Promoting health equity as it relates to cancer control is one of six priorities of the National Comprehensive Cancer Control Program (NCCCP). This article describes recent activities implemented by three NCCCP awardees (North-west Portland Area Indian Health Board, Kansas, Michigan) and the CDC-funded National Behavior Health Network (NBHN), whose aim is to reduce health disparities among those with mental health and/or substance disorders. North-west Portland administered tribal surveys to help better understand tribal cancer-related risk factors, health behaviors, provide baseline data to support their cancer plan, and obtain resources for targeted interventions. Kansas established a health equity workgroup with a vision of addressing health equity through implementation and uptake of activities among all Kansans. Michigan provided trainings in health equity and social justice and developed health equity learning labs. As a result of the successful implementation of the NBHN’s Community of Practice, individuals currently living with mental illness and/or substance disorders have had increased access to tobacco cessation and other cancer support services. These efforts and key opportunities for public health practitioners and their partners to increase engagement in cancer health equity are summarized in this article.

Introduction

The U.S. Department of Health and Human Services (DHHS) defines health equity as “attainment of the highest level of health for all people” [1] that includes “valuing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and healthcare disparities” (DHHS). Achieving health equity requires addressing social determinants of health, frequently defined as “conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks” [2].

Previous work in comprehensive cancer control and health disparities noted a growing need for culturally competent information and services, programmatic competition for limited federal and state resources, and lack of access to advanced technology and therapeutics to improve cancer prevention and control [3]. This work also highlighted the achievements of several National Comprehensive Cancer Control (NCCCP) awardees in reducing racial and ethnic cancer-related disparities [3, 4]. Since then, momentum to address health equity has continued to increase. Promoting health equity as it relates to cancer control is one of six priorities of the NCCCP [5].

The increase in knowledge about health equity and its drivers has also identified gaps in research and public health practice, including the need for interventions that include less well-studied populations, that enhance linkages between health care systems and the communities they serve, and that increase the focus of health care organizations and other stakeholders on equity as an essential element in quality improvement [6].

This article describes recent activities implemented by three NCCCP awardees (North-west Portland Area Indian Health Board, Kansas, Michigan) and the CDC-funded National Behavior Health Network (NBHN), whose work is focused on addressing behavioral-related disparities [7]. These CDC awardees collected data that can be used for local decision-making, building communities of practice, recruiting new partners, and prioritizing health equity as a foundational element of their cancer plan implementation.

Adequate data for decision-making: the Tribal Health Survey Project

North-west Portland Area Indian Health Board

American Indians/Alaska Natives (AI/ANs) experience a disproportionate burden of cancer, which is reflected in trends in incidence and mortality rates [8–11]. AI/ANs have higher rates of stomach, liver, cervix, kidney, and gallbladder cancers compared to non-Hispanic whites [12]. For cancers of the breast and cervix, AI/AN women are less likely than non-Hispanic white women to have their cancer found at early stages [12]. Regional cancer rates and risk factors vary among AI/ANs, reflecting differences in social and environmental factors that vary across geographic regions [8, 13–15]. Disparities also exist in screening rates for cervical, breast, and colorectal cancer among AI/ANs [14, 15]. Therefore, surveillance of health behaviors is important for planning and evaluating interventions to address cancer and other chronic diseases [16]. Public health surveillance systems operating at the national and state level often do not have sufficient sample size or collect information on tribal affiliation to provide adequate or meaningful data to tribal nations [17]. This becomes challenging when assessing the prevalence of health behaviors and conditions that can be used for priority setting and monitoring, including developing tribe- or tribal organization-specific cancer plans [15, 17].

In response to these concerns, CDC’s Division of Cancer Prevention and Control (DCPC) provided funding to the Indian Health Service through an interagency agreement (2010–2012; 2014) to help support the development and implementation of Tribal Health Surveys among tribal awardees of the NCCCP, with assistance from Tribal Epidemiology Centers. The intent of this project was to help participating tribes better understand cancer-related risk factors and health behaviors and provide baseline data to support their cancer plans and programmatic action plans. Some survey questions were developed independently by the tribes using a culturally-specific and appropriate context and manner, and some were adapted from CDC’s Behavioral Risk Factor Surveillance System’s (BRFSS) core module, as well as select BRFSS optional modules [18]. All tribes utilized questions for adverse childhood effects, historical trauma, and cultural protective factors.

The resulting Tribal Health Survey was administered among five tribes (two in Washington and three in Oregon) that are member tribes of the North-west Portland Area Indian Health Board (NPAIHB). The objectives of the survey were to assess risk factors for heart disease, cancer, and diabetes among tribal members; assess the extent and pattern of these health risk behaviors; and to determine the frequency of health care utilization and effectively plan tribal public health programs based on needs collected in the survey. Tribal councils approved the project and local Institutional Review Board (IRB) approvals were obtained for all tribal surveys. An important component of this project was tribal community engagement in all survey phases. Tribal health directors and tribal leadership were engaged during the entire process to obtain a tribal resolution (a formal resolution that expresses approval and support of the project); decide on the survey mode (phone vs. door-to-door survey) and inclusion criteria; develop the survey to include tribe-specific questions; complete the IRB application and protocol; prepare budgets, timelines, and tribal advertising through newsletters, flyers, and formal letters; complete data collection and analysis; and report on the results. Each tribal program gave valuable input to the summary report and determined their data needs for their community analysis.

Two surveys were conducted in-person as a door-to-door survey, while the other three surveys were done via phone, using NPAIHB NCCCP staff to complete the phone interviews (Table 1). If the tribe is unable to provide current phone numbers for enrolled members, then they have to do the survey in-person. Generally, phone surveys were considered less expensive and easier to monitor and ensure data quality. However, they required complete and accurate lists of phone numbers of tribal members, and response rates varied with this method. While most tribal members were willing to complete phone interviews, several attempts were often made in order to reach a person by phone, and some phone numbers were not current. In general, in-person surveys tended to yield slightly higher response rates, and avoided problems associated with phone coverage. In-person surveys were generally more expensive, due to the field staff required to conduct home visits. Data quality was more difficult to monitor, and field staff were limited to interviewing tribal members within a defined geographical area. The results of the tribal surveys were utilized not only in applying for government funding, but also implementing programs to address: tobacco use, rates of arthritis, heart disease, diabetes, and cultural programs. For example, one tribe is doing a sun safe and sunscreen campaign in response to the number of melanoma cases that were identified in their community (K. Lopez, personal communication, 2 July 2018).

Table 1.

Summary of target population and response rates—North-west Portland Area Indian Health Board Tribal Health Survey (2012–2015)

	Target populationa	Survey method		Sample size	Response rate (%)
Tribe 1	Adultb Tribal citizens	Census	Telephone	281	60
Tribe 2	Adult Tribal citizens living in clinic service area	Census	Telephone	299	29
Tribe 3	Adult Tribal citizens	Random sample	Door-to-door	424	75
Tribe 4	Adult Tribal citizens living in county	Census	Door-to-door (option for scheduling the interview at the tribal office)	319	64
Tribe 5	Adult Tribal citizens	Census	Telephone (computer-aided)	202	74

^aTribal membership at the time of the survey

^b18 years and older

Additionally, findings presented to a tribal council resulted in a new tribal initiative to promote higher education.

Tribal Nations in the Pacific North-west value having their own surveillance data to monitor their community’s health, track progress toward established objectives, and use for future funding opportunities. It is important for tribes themselves to not only own their data, but also control the use of their data due to past injustices by outside researchers. The tribal surveys conducted by NWPIHB demonstrate that it is feasible to conduct specific, multi-site Tribal Health Surveys using a model based on CDC’s BRFSS questionnaire, but adapted for use in tribal settings allowing for flexibility in data collection and culturally-appropriate design. The flexible data collection design allowed for on-the-ground and timely modifications in response to unforeseeable barriers that may arise during the survey, such as having out-of-date phone numbers of potential survey participants, changes in tribal enrollment policies (membership criteria) during the time of the survey, or staffing changes that require time to establish new relationships and build rapport. For example, after one tribe discovered during data collection that a number of phones were disconnected, its staff worked to update tribal member phone numbers by contacting the local health clinic and Head Start program, and visiting the tribal cultural camp and family activities to ask tribal members to update their phone numbers. Tribal programs then did a second direct mailing, post card, and reminder campaign asking tribal members to call the tribal office or NPAIHB staff to update numbers and schedule interviews.

The Tribal Health Survey is being sustained in the Pacific North-west with support from other funding sources, and several other tribes in this area are interested in conducting a survey with their tribal members. The first Tribal Health Survey was conducted in the Pacific North-west in 2001, and since that time, NPAIHB has refined protocols and procedures for successfully collaborating with tribes, conducting phone surveys, and supporting data analysis and reporting. The Tribal Health Survey Project provides a model for collecting and using culturally-relevant local data to inform and support health equity interventions. Using data from this survey, AI/AN tribes and tribal organizations are better able to direct their current and future resources to their most vulnerable populations within their communities. Tribes in the Pacific North-west intend to continue using the data collected from these surveys for future public health program planning and grant applications.

The role of partnerships and their approaches in addressing health equity

Kansas Cancer Partnership

The Kansas Cancer Partnership (KCP) established its Health Equity workgroup in the summer of 2017. The objective of the workgroup is to ensure that at least one strategy for each state plan objective will improve health equity [19]. This is measured by the number of implemented and evaluated state plan strategies that are specifically designed to reduce health disparities (income, education level, insurance status, population density, race/ethnicity, and gender). Each proposal for a cancer plan implementation project included an explanation of how the activity will reduce disparities. The workgroup has conducted several activities since it convened including: reviewed existing data to identify target populations; identified evidence-based interventions such as health systems approaches in Federally Qualified Health Centers to address cancer-related social determinants of health; and assessed its future needs to effectively address health equity. Additionally, members of the Health Equity workgroup serve on other KCP workgroups to ensure that health equity is addressed in all other cancer plan activities. Strong collaborations with other workgroups within the KCP as well as external organizations, such as the Mid-west Cancer Alliance, facilitated targeted marketing and cancer screening services to Kansans living in rural areas and other populations that have disproportionately high burdens of cancer, issues with access to screening, or increased risk factors. The foundation of KCP’s success is a clear definition of health equity and understanding of how KCP could most effectively promote it.

Michigan Comprehensive Cancer Control

The Michigan Comprehensive Cancer Control Program (MICCCP) within the Department of Health and Human Services has established a relationship with the Michigan Cancer Consortium (MCC). The Michigan Cancer Consortium is a state-wide, inclusive, broad-based partnership of public and private organizations that provides a forum for collaboration to reduce the human and economic burden of cancer among the citizens of Michigan [20]. One of the pillars of the MCC is promoting health equity, the achievement of the highest level of health for all people, by eliminating health disparities, which are inequalities in health that exist among socially, economically, and/or environmentally disadvantaged populations, and MCC board members review disparity data as they relate to the state cancer plan. These data are then shared with the health equity standing committee. The committee recently developed a health equity data dashboard, [21] which is now live for the MCC priorities, which includes “live” data on race/ethnicity, insurance status, and education. The MCC Board of Directors is committed to reducing cancer disparities by requiring the health equity pillar to be embedded in all cancer plan work. This is done by addressing social issues affecting health and promoting access to high quality services for cancer. The MCC provides trainings including an Introduction to Health Equity and Social Justice to the MICCCP program staff.

Building a Community of Practice: the National Behavioral Health Network (NBHN) for tobacco and cancer control

CDC’s DCPC, in collaboration with the Office on Smoking and Health, funds a Consortium of eight National Networks in the following target populations: African Americans; American Indians/Alaskan Natives; Asian Americans/ Pacific Islanders/Hawaiian Natives; Latinos/Hispanics; lesbian, gay, bisexual, and transgender (LGBT); persons with low socioeconomic status; persons with mental health and substance abuse disorders; and geographically defined populations with high commercial tobacco use [7]. The networks focus on reducing disparities in cancer health outcomes and tobacco use in populations that struggle with particular health challenges and may not have adequate access to quality health care or health information. Through the Consortium of National Networks, CDC is strengthening the NCCCP’s capacity to increase awareness and support in certain communities for activities that promote healthy behaviors among cancer survivors. The National Networks have been engaged in a variety of activities to enhance the quality and performance of specific public health programs, public health data and information systems, public health practice and services, public health partnerships, and public health resources that focus on tobacco-related and cancer health disparities in specific disparate populations. Examples include the development of training guides, state strategy sessions, specialized learning sessions to further enhance outreach efforts, tailored fact sheets, infographics, and tailored materials. Building a Community of Practice (CoP) is a successful strategy that has been utilized effectively by the NBHN.

A CoP is defined as “a group of people who share a concern, a set of problems, or a passion about a topic, and who deepen their knowledge and expertise by interacting on an ongoing basis” [22]. The NBHN serves individuals with behavioral health conditions, mental illness and/or substance use disorders (SUDs). NBHN provides a resource, training and technical assistance hub for community behavioral health organizations (CBHOs); healthcare professionals; local, state, territorial and tribal health departments; and other organizations addressing the social determinants of health. NBHN develops innovative ways of reaching and supporting the behavioral health and larger cancer control community, through the use of white papers, policy briefs and a wide array of in-person and virtual activities (e.g., trainings and technical assistance, communities of practice, state strategy sessions coaching calls, e-digests, videos, and roundtables) to help reduce tobacco and cancer-related disparities among individuals with behavioral health conditions.

One of the NBHN’s successful activities has been the implementation of an 8 month long CoP, which has delivered six training sessions since 2013. Over the past 5 years, located all across ten HHS regions, 89 organizations from 23 different states, multiple tribes and one territory have participated in the NBHN’s CoP to address the disproportionately high prevalence of tobacco use and cancer among individuals with behavioral health conditions. The NBHN CoP brought together organizations, including CBHOs, hospitals, health departments, and cancer control departments, that provide a forum for peer learning, training, and coaching from world-renowned subject matter experts to support the organizations through capacity building activities as well as action and sustainability planning. As a result of the CoP, individuals currently living with mental illness and/or SUD have had increased access to tobacco cessation and other cancer support services. For example, the Pittsburgh Mercy Health System, a member of the 2015 CoP, worked diligently during the CoP implementation to make nearly 60 behavioral health campuses 100% tobacco-free, resulting in decreased on-site smoking and second-hand smoke exposure impacting over 33,000 people annually [23]. Tobacco cessation counseling and building wellness activities in partnership with other local organizations were also provided. Red Rock Behavioral Health Services joined NBHN’s 2017 CCBHC CoP and initiated an education and screening campaign for Pap tests and mammograms for all eligible women. This increased screening by 56% of all women eligible for a Pap test, and 64% of women eligible for mammograms across the organization in ten Oklahoma counties. Evaluation of the CoP has shown a demonstrable increase in attendee knowledge and practice improvement about tobacco and cancer [23]. In 2017, 96% of participants reported increased confidence in explaining the importance of cancer screening with behavioral health populations to colleagues and leadership; 86% of attendees reported being able to draft and propose a policy that incorporated cancer control strategies and 86% reported they were confident in creating and implementing an action plan with cancer control strategies [23]. New activities initiated as a result of the CoP include: implementing tobacco-free policies across organizations and select facilities; implementing and/or enhancing cancer screenings for clients and staff; training employees in wellness screening procedures; launching awareness campaigns; developing additional cancer support services for survivorship groups, education groups, and financial assistance programs. Attendees specifically referred to in the 2017 CoP were CBHO staff that made up each CoP Team including clinicians, administrators, leadership, state tobacco and cancer control staff, other public health department staff, primary care organizations, as well as tribal government staff. To ensure continued sustainability, the CoP has developed a master class for organizations that previously participated in the CoP in order to boost, enhance and reinforce tobacco and cancer control activities implemented over the last 4 years.

Moving forward on health equity: opportunities for comprehensive cancer control

Cancer continues to be a public health challenge, especially among disparate populations. CDC is well-positioned to address cancer health equity through the NCCCP and Consortium of National Networks. Partnerships play a key role in the success of the implementation and uptake of activities related to addressing health equity. To further advance their health equity agendas, awardees and their partners could explore a number of opportunities that address gaps in research and evaluation of interventions designed to reduce health disparities. Specific examples of these types of activities are described below.

Consider: (1) interventions that incorporate engagement of communities more broadly in developing and disseminating culturally-appropriate interventions; (2) research that compares the effectiveness of broad approaches versus those that address specific barriers or populations; (3) research that evaluates whether multicomponent interventions are more effective than those that target a single component; and (4) interventions and research that address challenges to translate research into real-world practice [6]. Purnell and colleagues identify knowledge and translation gaps across four intervention levels including the patient level; family/ friends/social support level; organization and provider level; and policy and community level. For the patient level, additional interventions could be considered that address within-group differences, including in less well-studied populations (i.e., AI/AN, rural residents, refugees, and immigrants). For the family/friends/social level, interventions could be considered that address the roles of culture and family in decision-making and make use of social network dynamics. For the organization and provider level, interventions and research could be considered that demonstrate how to optimize the use of data sources and health information technology to reduce health disparities; the impact of team-based care on improving access to and coordination of care for underserved groups; and how to increase the focus of health care organization leaders on equity as a suggested quality improvement. For policy and community level, intervention linkages between health care systems and the communities they serve could be enhanced.

There is also a suggestion to develop and evaluate standardized health equity performance measures [24]. Penman-Aguilar and colleagues outline five recommended practices for measurement to advance health equity. The first is to assess differences in health and its determinants that are associated with social position (i.e., race/ethnicity, sex, gender identity, sexual orientation, socioeconomic position, country of birth, disability status, and geographic region). However, it is important to note that some data elements are challenging to collect with our existing cancer surveillance data sources. For example, few clinical settings collect sexual orientation or gender identity data, making it difficult to appropriately measure patient needs or design and provide evidence-based interventions. The second is to assess social and structural (e.g., including policies, programs, decision-making/governance, and economics) determinants of health and measure them at multiple levels. The third recommended practice is to provide justification for methodological choices and clarify their implications (i.e., reference point, absolute vs. relative scale, subgroup size, pairwise vs. summary approach). The fourth recommendation is to address within-group differences by comparing groups simultaneously and classifying them by multiple social statuses (i.e., monitor health and determinants at the intersection of race/ethnicity, SES, and sex, or race/ethnicity, sex, and disability status). Among immigrant populations, this could include assessing country of birth and time since immigration. Lastly, stakeholder audience needs to be taken into consideration when selecting measures. One caveat of this recommendation is that it could bias the results and conclusions, including implications on audience perceptions or judgments. Benchmarks can be used to place changes over time in context and measure progress. Benchmarks are often established using historical factors.

There are several resources that may assist NCCCP awardees and their partners in identifying key health equity performance measures. Healthy People, the nation’s health promotion and disease prevention initiative to improve the health of all people in the United States—identified “achieve health equity, eliminate disparities and improve health of all groups” as one of its four overarching goals when Healthy People 2020 (HP2020) was launched in 2010 [2]. HP2020 also includes social determinants of health as one of its 12 leading health indicator topics. To help public health professionals monitor progress achieving HP2020 goals, HHS’s Office of Disease Prevention and Health Promotion partnered with CDC’s National Center for Health Statistics and Office of Minority Health and Health Equity to develop a tool that shows health disparities information for measurable, population-based objectives where data are available [25]. The tool can be used to view health disparities by demographic groups, visualize disparities data and trends, and compare data points for each population group. The Community Guide includes evidence-based strategies to help communities develop health equity interventions and initiatives that focus on selected social determinants of health. These strategies address improving educational and health outcomes, reducing educational achievement gaps, and improving household and neighborhood safety for low-income families [26]. HDPulse, a new online health disparities resource modeled after the State Cancer Profiles website, [27] is available from the National Institute of Minority Health and Health Disparities. The data portal will help users identify, track, and study issues related to health disparities (e.g., screening, risk factors, socio-demographics). The intervention portal will offer evidence-based interventions to improve minority health and health disparities [28].

Often, research studies and programmatic interventions are designed without a full picture of the local context in which health disparities occur. Andermann and colleagues [29] suggest that implementation and evaluation research needs to be conducted in partnership with key decision makers, such as community organizations, who can apply findings in a way to improve health status and reduce health disparities. Coalitions are ideally positioned to serve as decision makers who can guide and inform implementation and evaluation research efforts. Public health departments have often convened partners across sectors and among national, state and local organizations [30]. Coalitions mobilized for public health provide many advantages, including bringing perspectives from diverse organizations and community members, facilitating community engagement, and maximizing limited resources. Both NCCCP and the Comprehensive Cancer Control National Partners have supported the progression of coalitions for the development and implementation of comprehensive cancer control plans [31]. In doing so, public health coalitions encounter several challenges. Member organizations should first build trust, work though power dynamics, and balance competing priorities. Members of newly convened coalitions may have a great deal of energy, enthusiasm, and commitment to participation. Over time, however, coalition members may experience burnout or may need to direct their energy to other efforts. Given its challenges, NCCCP awardees have demonstrated that they and their partners can provide leadership in advancing health equity as the field continues to evolve. Over the last 20 years, the NCCCP has been engaged in promoting health equity in cancer control. The NCCCPs, through support from their existing partners, have made substantial progress in addressing health equity through data collection used for local decision-making, the building of Communities of Practice, and recruitment of new partners.