Nadine Barrett

This Longitudinal patient navigation Matrix Model was developed to overcome barriers across the cancer care continuum by offering prepatients, patients, and their families with support services. The extraordinary heterogeneity of patient needs during cancer screening, risk assessment, treatment, and survivorship as well as the vast heterogeneity of oncology care settings make it nearly impossible to follow a static navigation model. Our model of patient cancer navigation is unique as it enhances the traditional model by being highly adaptable based on both patient and family needs and scalable based on institutional needs and resources (eg, clinical volumes, financial resources, and community-based resources). This relatively new operational model for system-wide and systematic navigation incorporates a carefully cultivated supportive care program that evolved over the last decade from a bottom up approach that identified patient and family needs and developed appropriate resources. A core component of this model includes shifting away from department-centric operations. This model does not require a patient to opt in or independently be able to report their needs or ask for services-it is an opt out model. The multidisciplinary "cross-training" model can also facilitate reimbursement and sustainability by clarifying the differentiating actions that define navigation services: identification of barriers to quality care and specific actions taken to overcome those barriers, across the full continue of cancer care from community engagement to survivorship or end-of-life care.

BACKGROUND: Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community-based sample across 3 distinct geographic areas. METHODS: Three National Cancer Institute-designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. RESULTS: African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. CONCLUSIONS: Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well-established community partnerships and long-standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute-designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system-level and individual-level barriers to participation in both clinical trials and biospecimen donation for research.

Achieving cancer health equity is a national imperative. Cancer is the second leading cause of death in the United States and in North Carolina (NC), where the disease disproportionately impacts traditionally underrepresented race and ethnic groups, those who live in rural communities, the impoverished, and medically disenfranchised and/or health-disparate populations at high-risk for cancer. These populations have worse cancer outcomes and are less likely to be participants in clinical research and trials. It is critical for cancer centers and other academic health centers to understand the factors that contribute to poor cancer outcomes, the extent to which they impact the cancer burden, and develop effective interventions to address them. Key to this process is engaging diverse stakeholders in the development and execution of community and population health assessments, and the subsequent programs and interventions designed to address the need across the catchment area. This chapter describes the processes and lessons learned of the Duke Cancer Institute's (DCI) long standing community partnerships that led to Project PLACE (Population Level Approaches to Cancer Elimination), a National Cancer Institute (NCI)-funded community health assessment reaching 2315 respondents in 7 months, resulting in a community partnered research agenda to advance cancer equity within the DCI catchment area. We illustrate the application of a community partnered health assessment and offer examples of strategic opportunities, successes, lessons learned, and implications for practice.

Advance care planning (ACP) improves end-of-life care for patients and their caregivers. However, only one-third of adults have participated in ACP and rates are substantially lower among African Americans than among whites. Importantly, ACP improves many domains of care where there are racial disparities in outcomes, including receipt of goal-concordant care, hospice use, and provider communication. Yet, few studies have examined the effectiveness of ACP interventions among African Americans. The objectives of reducing disparities in the quality of palliative care for older African Americans through improved advance care planning (EQUAL ACP) are as follows: to compare the effectiveness of two interventions in (1) increasing ACP among African Americans and whites and (2) reducing racial disparities in both ACP and end-of-life care; and to examine whether racial concordance of the interventionist and patient is associated with ACP. EQUAL ACP is a longitudinal, multisite, cluster randomized trial and a qualitative study describing the ACP experience of participants. The study will include 800 adults ≥65 years of age (half African American and half white) from 10 primary care clinics in the South. Eligible patients have a serious illness (advanced cancer, heart failure, lung disease, etc.), disability in activities of daily living, or recent hospitalization. Patients are followed for one year and participate in either a patient-guided, self-management ACP approach, including a Five Wishes form or structured ACP with Respecting Choices First Steps. The primary outcome is formal or informal ACP-completion of advance directives, documented discussions with clinicians, and other written or verbal communication with surrogate decision makers about care preferences. Secondary outcomes assessed through after-death interviews with surrogates of patients who die during the study include receipt of goal-concordant care, health services use in the last year of life, and satisfaction with care. EQUAL ACP is the first large study to assess which strategies are most effective at both increasing rates of ACP and promoting equitable palliative care outcomes for seriously ill African Americans.

Inflammatory breast cancer (IBC) is an understudied and aggressive form of breast cancer with a poor prognosis, accounting for 2-6% of new breast cancer diagnoses but 10% of all breast cancer-related deaths in the United States. Currently there are no therapeutic regimens developed specifically for IBC, and it is critical to recognize that all aspects of treating IBC - including staging, diagnosis, and therapy - are vastly different than other breast cancers. In December 2014, under the umbrella of an interdisciplinary initiative supported by the Duke School of Medicine, researchers, clinicians, research administrators, and patient advocates formed the Duke Consortium for IBC to address the needs of patients in North Carolina (an ethnically and economically diverse state with 100 counties) and across the Southeastern United States. The primary goal of this group is to translate research into action and improve both awareness and patient care through collaborations with local, national and international IBC programs. The consortium held its inaugural meeting on Feb 28, 2018, which also marked Rare Disease Day and convened national research experts, clinicians, patients, advocates, government representatives, foundation leaders, staff, and trainees. The meeting focused on new developments and challenges in the clinical management of IBC, research challenges and opportunities, and an interactive session to garner input from patients, advocates, and community partners that would inform a strategic plan toward continuing improvements in IBC patient care, research, and education.