Development of an Actionable Framework to Address Cancer Care Disparities in Medically Underserved Populations in the United States: Expert Roundtable Recommendations.

PURPOSE: Cancer disparities persist among medically underserved populations despite widespread efforts to address them. We describe the development of a framework for addressing cancer care disparities across the cancer care continuum (CCC), guided by the CCC domains established by the Institute of Medicine/National Academies of Sciences, Engineering, and Medicine (IOM/NAS).
MATERIALS AND METHODS: An environmental scan was conducted to identify strategies and associated experts who are providing or have successfully provided community- and/or patient-centric IOM/NAS-defined domain standards to our target populations. A multistakeholder expert roundtable working group was convened for framework development. A premeeting survey informed agenda development, documented expert practices for target populations, and identified priority areas for meeting focus.
RESULTS: The environmental scan identified 84 unique experts across 8 stakeholder groups and 44 patient organizations; 50 were invited to the roundtable and 33 participated. They broadly represented disease sites, geography, and experience with target populations and all CCC domains. The premeeting survey (16 responses) identified coordination of care or patient navigation (66.7%), community engagement (60.0%), and healthcare system changes (53.3%) as priority focus areas. The experts identified access and treatment barriers or gaps within and between CCC domains, specified key notable practices to address these, and developed an actionable framework and recommendations for each priority focus area.
CONCLUSION: The framework and recommendations are intended to guide researchers, healthcare leaders, advocates, community- and patient-focused service organizations, and policy leaders to address and promote health equity in cancer care access and treatment outcomes.

INTRODUCTION

Disparities in cancer burden and access to care among different populations in the United States and the resultant outcome disparities are well-documented.[1-3] Contributing factors include social determinants of health (SDOH)—the conditions in which people work, live, and play,[4-7] disparities in insurance coverage and access to care,[8-10] and variable quality of care.[11-14] Implicit bias and patient- and system-level factors play a role.[15-18] Although the higher incidence of some cancers in certain populations is not fully understood,[19-22] other disparities are clearly related to differences in treatment and other external factors.[20,23-27] Data show that inequities in health care exist across the entire cancer care continuum (CCC) and are disproportionately affecting medically underserved populations who may encounter cultural, linguistic, economic, and other barriers to care.[28-31]

Greater effort is being placed upon the importance of achieving health equity. Increasingly, initiatives across different sectors of the US healthcare system and in a variety of medical practice settings aim to address disparities in cancer care and improve outcomes for traditionally underserved populations. National efforts seek to increase underrepresented populations in clinical trials,[32-34] to ensure Medicaid coverage of clinical trial participation,[35] and to reduce cancer burden through improved preventative services.[36] Other initiatives, such as the National Cancer Institute’s Community Network Program, focus on partnering with community-based organizations to develop targeted interventions to address cancer disparities among racial and ethnic populations.[37] Despite both national and local efforts, gaps in the CCC persist.

Because of the complexity of US health care, a collaborative approach is needed to address disparities along the CCC. The continuum of care cannot be viewed as discrete domains or silos; rather, each domain is interrelated and affects patient outcomes. Therefore, a holistic approach is required to develop systemic changes that can provide coordinated care to address barriers within each domain while helping implement programs that bridge care from one domain to the next. A coordinated multistakeholder focus on sometimes simultaneously occurring multilevel interventions that affect health—interpersonal, organizational, community, educational, occupational, environmental, and policy—is required to enable high-impact CCC practices at a local level.[38]

Although our earlier work described notable practices for recruiting racial and ethnic minority groups into cancer clinical trials,[39,40] this paper explains the development of a framework for addressing cancer care disparities across the CCC, guided by the Institute of Medicine/National Academies of Sciences, Engineering, and Medicine (IOM/NAS)–established CCC domains.[41] Because practices and efforts are not routinely documented or published, we selected a workshop approach bringing together experts across the CCC as an effective method for framework development. A table of definitions for commonly used terms is provided in the Appendix Table A1, online only.

TABLE A1.

Primary Roles and Stakeholder Group Affiliations of Roundtable Expert Participants

MATERIALS AND METHODS

Framework Focus and Scope

The 21 members of the CCC Steering Committee agreed on the focus of the framework. Target populations were racial and ethnic minority groups (African American, Hispanic, Asian American, American Indian, and Alaska Native) and medically underserved populations (including rural, aged, adolescent or young adult [age 15-39 years[42]], LGBTQ, differently abled, immigrants and refugees, and under- and uninsured).

We agreed that the framework should be especially germane to high-prevalence cancer conditions (ie, breast, lung, blood, prostate, and colorectal cancers) and that it should center on four of the six IOM/NAS CCC domains—screening, diagnosis, treatment, and survivorship—with emphasis on addressing barriers to access within and between those domains.

The Steering Committee developed core themes for questions to be addressed by roundtable participants. The themes covered barriers within the CCC for included populations, roles and responsibilities of diverse stakeholders in promoting health equity, initiatives and strategies that may bridge gaps in the CCC and overcome challenges to achieving health equity, research imperatives, and policy changes required to facilitate adoption of best practices. The unique methodology used to arrive at the conclusions made herein involved synthesizing multistakeholder recommendations without driving the group toward consensus.

Environmental Scan to Identify Experts for Framework Co-Creation

From March to September 2018, Google searches on the IOM/NAS CCC domains, including patient navigation, were used to identify experts associated with pertinent clinical or research programs underway or completed in the previous 5 years (January 2013 to December 2018). Search terms and Boolean logic combinations were used; for each target population, search terms included cancer AND diversity, health equity, prevention, screening, diagnosis, treatment, clinical trials, research, SDOH, financial, health literacy, health systems, survivorship, and end-of-life care.

Experts were further evaluated based on their biographies (from organization websites) and publications (PubMed search). The scan included speakers and authorities who had participated in the past 3 years in public meetings regarding diversity and inclusion in cancer research and efforts by patient organizations, foundations, and government agencies focused on high-prevalence cancers among racial and ethnic minorities. Experts were invited to participate in the roundtable Working Group based on the CCC Steering Committee-approved criteria: most appearances in the environmental scan and documented work in target populations related to the CCC domains.

Premeeting Survey and Development of Roundtable Preparation Materials

The CCC Steering Committee developed and distributed a survey to confirmed attendees 5 weeks before the roundtable meeting. Anonymized survey responses were used to inform agenda development, generate a discussion guide, and document expert practices to highlight programs with the greatest impact (Appendix Fig A1, online only).

Fig A1.

Flow diagram of experts invited to the roundtable meeting.

Relevant literature regarding initiatives, submitted by the experts (n = 20) before the meeting or identified through the environmental scan, was provided to participants. They were asked to review these publications prior to the meeting and identify notable practices in the care of racial and ethnic minorities and other underserved populations for discussion at the roundtable. Publications were grouped into focus areas for the meeting: screening (n = 26), diagnosis (n = 9), treatment or clinical trials (n = 23), survivorship (n = 5), coordinated care or patient navigation (n = 26), healthcare system changes (n = 5), community engagement (n = 13), resources for patients or providers (n = 10), nontherapeutic trials (n = 2), and another category including data-driven approaches, measurement, and technology (n = 13). Participants were also provided with other relevant documents to provide context (eg, the IOM/NAS report).

Identification of Barriers Within or Between Selected Domains

Barriers preventing equitable access to cancer care were identified by the participants through roundtable breakouts (of five to six experts). They answered CCC Steering Committee-generated questions and provided feedback to the larger group. Discussions were recorded and transcribed by a professional writer who ranked the barriers based on the number of mentions.

Development of Recommendations on Policy Interventions

In the premeeting survey, the experts identified policy solutions that demonstrated a positive impact on overcoming barriers along the CCC for the target populations; these were discussed and consolidated during the meeting. Participants prioritized policy interventions with examples to develop specific recommendations. Discussion was captured and transcribed.

RESULTS

Environmental Scan and Premeeting Survey

The environmental scan identified 84 unique experts across 8 stakeholder groups (Appendix Fig A2, online only) and 44 unique patient organizations (representing prostate, breast, lung, and colorectal cancers and pan-cancer). Identified experts had documented processes and best practices across all CCC domains, comprising prevention and risk reduction (28.6%), screening (29.8%), diagnosis (10.7%), treatment (8.3%), survivorship (17.9%), and end-of-life care (4.8%). In addition, 26.2% were experts in all 6 domains, 35.7% in multiple domains, and 14.3% in Patient Navigator Research Programs. In total, 50 experts met selection criteria and were invited to participate in the roundtable meeting; 33 (66%) invitees attended (4 from the pharmaceutical industry). The premeeting survey was sent to 22 confirmed participants (number confirmed by the survey distribution date) representing all 8 stakeholder groups, and 16 responses were received (73% response rate) (Appendix Fig A3, online only).

Fig A2.

Experience of survey respondents in one or more of the CCC domains across target populations (based on 16 responses). CCC, cancer care continuum; LGBTQ, lesbian, gay, bisexual, transgender, and questioning.

Fig A3.

Domain of the CCC that was the primary focus of survey respondents (based on 16 responses). CCC, cancer care continuum.

There was expert representation by disease site and geography. Respondents were experienced in the range of target populations, though mostly African-American and Hispanic (both 81.3%), elderly (62.5%), rural, and adolescent or young adult (50.0%). The majority (56.3%) had experience across all domains, most commonly in screening (62.5%) and treatment or clinical trials (56.3%) (Appendix Fig A4, online only). There was some overlap in expertise, as evidenced by biographies and survey responses for approximately 30% of confirmed experts. Almost half (47%) of the respondents identified the treatment domain for focus in optimizing outcomes for target populations, with screening, diagnosis, and survivorship cited by 23%, 16%, and 14%, respectively. Regarding addressing gaps in best practices between domains, a higher proportion of responses focused on bridging the gap between diagnosis and treatment (41%), compared with between screening and diagnosis (32%), and treatment and survivorship (27%). Areas of focus most commonly identified as having the greatest potential impact on cancer patient outcomes in the target populations were coordination of care or patient navigation (66.7%), community engagement (60.0%), and healthcare system changes (53.3%) (Appendix Fig A5, online only).

Fig A4.

Areas of focus with the potential to have the greatest impact on cancer patient outcomes in target populations as a result of the expert roundtable meeting (based on 15 responses).

Fig A5.

Geographic distribution of roundtable participants (N = 33).

Participants identified barriers within and between the four domains (screening, diagnosis, treatment, and survivorship) for the target populations. Some were common to all domains, including lack of coordination of multiple visits, providers, and testing especially related to transitions in care; logistical or financial barriers to care; difficulty in addressing and documenting SDOH so that data become part of the electronic medical record and are communicated to providers throughout the continuum; diverse languages spoken in community or institutional settings requiring multilingual navigators; geographic and social isolation within underserved communities; lack of familiarity with resources that address financial and other social support needs including transportation, childcare, elder care, and emotional support; distrust in the healthcare system, which may result in delayed or incomplete care; and time constraints and employment demands requiring navigators to establish individualized goals with patients and care partners.

Common barriers identified across screening, diagnosis, and treatment were ineffective approaches to navigation, including the lack of standards or metrics, delays between screening and diagnosis, and delays between diagnosis and treatment. Poor clinician-patient communications, low health literacy, unsustainable financial models for navigation programs, competition for patients in institutions or groups, and the lack of timely discussion regarding clinical research participation (ie, not during treatment consultations) were all cited as common barriers across diagnosis and treatment.

Evaluation of High-Impact Practices

Based on premeeting survey results and roundtable consensus, patient navigation, community engagement, and healthcare system changes were designated as priority focus areas. For each of these, participants reviewed relevant barriers and/or gaps, and the specific domains affected. Through discussion on documented practices (identified during the premeeting work), they reached agreement on key notable practices for addressing these barriers and/or gaps. Their insights informed the development of actionable recommendations related to practices shown to positively affect each specific focus area.

Highest Impact Areas Across the CCC: Patient Navigation, Community Engagement, and Healthcare System Change

Patient navigation was defined as providing individual assistance to patients, family, and caregivers to overcome barriers to medical care and self-care and tracking patients to ensure timely access to quality care. Patient navigation comprises tactics and activities that bridge the gaps between domains. Participants noted that navigators may be lay navigators (individuals from the community, with no clinical expertise, who relate to patients in a culturally appropriate manner and connect the community with the healthcare system), clinical navigators (nurses or social workers), or members of a multidisciplinary team of navigators who address a broad range of social and clinical needs.

Notable practices in patient navigation were identified across all four domains. Table 1 summarizes those identified as helping to bridge the gap between domains, which are therefore recommended for use by navigation teams. These practices included tracking patients through transitions of care, including second opinions and warm handoffs from one provider or service to the next (especially from surgery to medical oncology), use of data and information technology solutions to track metrics and effective navigation throughout the CCC, and screening for cancer-related distress and SDOH (even prior to the first appointment), with ongoing assessment along the CCC to adapt to changing needs.

TABLE 1.

Notable Practices and Recommendations in Patient Navigation Between the Four Domains

Roundtable participants agreed upon actionable recommendations for community engagement, including identifying target populations and domains of focus (Table 2). Recommendations included identification and collaboration with trusted community organizations to disseminate health information and inclusion of community members on hospital boards and patient or family advocacy or advisory committees, to leverage community strengths and networks. Actionable recommendations for healthcare system change, with emphasis on specific domains of focus, were also debated and are summarized in Table 2. These include developing a realistic assessment of operational capacity or commitment before outreaching to target populations; ensuring workforce diversity and cultural awareness training; identifying and sharing appropriate health-literate, culturally sensitive, and linguistically appropriate resources; developing clear transitions of care processes that include accountability and documentation; and developing health equity metrics as part of the institutional performance scorecard against which senior leaders are measured.

TABLE 2.

Actionable Recommendations for Community Engagement and Healthcare System Change

Recommendations for Refinements to Policy Interventions

The participants reviewed policy solutions known to be effective in improving cancer care for target populations and developed recommendations for further policy refinement (Table 3). The need for adequate insurance coverage and increased focus on SDOH in cancer care were identified as the two overarching themes and critical challenges. Specific recommendations included extending current health insurance and enhancement initiatives to state and federal levels, strategic support and reimbursement of navigation services as a cancer care essential benefit (including lay navigation), and securing higher reimbursement rates for clinicians caring for these populations.

TABLE 3.

Recommendations for Refinements to Policy Interventions and Priority Actions Across the Cancer Care Continuum

Identification of Priority Actions Across the CCC

Participants were asked to identify priority actions for near-term implementation to help address disparities among target populations across the CCC (Table 3). These were segmented according to seven core themes: community engagement, patient navigation, data collection, health equity, generating funding support, education and training, and clinical trials. The priority actions included establishing community-academic partnerships to support patient navigation and implementation of guidelines outlined by HHS.

DISCUSSION

There is an urgent need to address disparities across the entire CCC, especially in an environment of increasing complexity with expanded healthcare teams and treatment options.[50-52] The complicated and interconnected nature of the CCC means that everyone in the cancer care community is jointly responsible for ensuring access to high-quality care across the entire continuum—not just within their own domain. If dipartites are not addressed, health inequity will be exacerbated, increasing the burdens for underserved and vulnerable populations.

The roundtable was convened to facilitate collaboration and sharing of best practices and to identify effective practices that address disparities along the CCC, which may not yet been documented in the medical literature. Convened experts identified community engagement, patient navigation, and healthcare system changes as key issues to address to deliver equitable cancer care and highlighted the importance of partnering with community organizations. They also emphasized the need for adequate insurance coverage and for SDOH-focused strategies to be at the heart of policy improvements (two key challenges exposed by COVID-19).

Our recommendations have potential limitations. Per results of the premeeting survey, we intentionally focused on CCC domains that involved components of the healthcare system; domains of prevention, risk reduction, and end-of-life care were not covered. The literature review, though comprehensive, was not exhaustive; in addition, successful local community approaches not documented or published would not have been captured. Another potential limitation is that experts were invited rather than self-nominated, which may mean that not all views and experiences were represented.

The COVID-19 pandemic and its disproportionate impact on communities of color and other vulnerable populations underscore the critical importance of addressing inequities in health care. The higher infection and death rates within racial and ethnic minority communities are attributable to SDOH and inequities in healthcare access and delivery.[53-55] The pandemic has exposed long-standing deficiencies in the US healthcare system and has exacerbated disparities in care for other health conditions such as cancer. The COVID-19 experience further underscores that health equity must be a national priority and has demonstrated how quickly healthcare systems can evolve and adopt alternative care models (eg, use of telehealth).[56,57] When motivated, either by will or economic and clinical imperatives, solutions can be developed and implemented rapidly. Yet, care must be taken to ensure equitable access to any innovative approaches developed so that disparities are not exacerbated, as is highlighted by the current digital divide that prevents everyone from having access to telehealth, for example.

In summary, this multistakeholder group of expert participants, guided by the domains of the IOM/NAS-established CCC, has developed a practical, sustainable CCC framework applicable to high-prevalence cancers in racial and ethnic minority and underserved communities. Framework development was informed by collaboration with US community leaders and other stakeholders who have implemented successful programs to improve cancer-related health outcomes for the communities they serve. We believe that this framework will have a meaningful and positive impact on reducing cancer care disparities. Furthermore, we want to inspire and encourage clinicians and researchers to document their practices, ensuring more robust and evidence-led initiatives (Appendix Fig A6, Fig A7, online only).

Fig A6.

Summary of the approach used to develop an actionable framework to address cancer care disparities in medically underserved populations in the United States.

Fig A7.

Summary of expert informed key findings and priority actions across and between the cancer continuum of care for medically underserved populations in the United States.

We have also developed recommendations for national policy changes needed to support the suggested healthcare system changes and to ensure long-term sustainability of a more equitable cancer care system. A common theme across policy change recommendations is to leverage existing best practices that have guided key initiatives (eg, Medicaid expansion[58]) to different policy areas. In lieu of reinventing the wheel, building upon existing, effective practices, and adapting these to address inequities along the CCC will help reduce cancer disparities for underserved populations.