RESUMO
BACKGROUND: Population-based linked datasets are vital to generate catchment area and population health research. The novel Cancer Information and Population Health Resource (CIPHR) links statewide cancer registry data, public and private insurance claims, and provider- and area-level data, representing more than 80% of North Carolina's large, diverse population of individuals diagnosed with cancer. This scoping review of articles that used CIPHR data characterizes the breadth of research generated and identifies further opportunities for population-based health research. METHODS: Articles published between January 2012 and August 2023 were categorized by cancer site and outcomes examined across the care continuum. Statistically significant associations between patient-, provider-, system-, and policy-level factors and outcomes were summarized. RESULTS: Among 51 articles, 42 reported results across 23 unique cancer sites and 13 aggregated across multiple sites. The most common outcomes examined were treatment initiation and/or adherence (n = 14), mortality or survival (n = 9), and health-care resource utilization (n = 9). Few articles focused on cancer recurrence (n = 1) or distance to care (n = 1) as outcomes. Many articles discussed racial, ethnic, geographic, and socioeconomic inequities in care. CONCLUSIONS: These findings demonstrate the value of robust, longitudinal, linked, population-based databases to facilitate catchment area and population health research aimed at elucidating cancer risk factors, outcomes, care delivery trends, and inequities that warrant intervention and policy attention. Lessons learned from years of analytics using CIPHR highlight opportunities to explore less frequently studied cancers and outcomes, motivate equity-focused interventions, and inform development of similar resources.
Assuntos
Área Programática de Saúde , Neoplasias , Saúde da População , Humanos , Área Programática de Saúde/estatística & dados numéricos , Bases de Dados Factuais , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Neoplasias/epidemiologia , Neoplasias/terapia , North Carolina/epidemiologia , Saúde da População/estatística & dados numéricos , Sistema de RegistrosRESUMO
The increasing focus on precision medicine to optimize cancer treatments and improve cancer outcomes is an opportunity to consider equitable engagement of people racialized as Black or African American (B/AA) in biospecimen-based cancer research. B/AA people have the highest cancer incidence and mortality rates compared with all other racial and ethnic groups in the United States, yet are under-represented in biospecimen-based research. A narrative scoping review was conducted to understand the current literature on barriers, facilitators, and evidence-based strategies associated with the engagement of B/AA people with cancer in biospecimen research. Three comprehensive searches of MEDLINE, CINAHL, Embase, and Scopus were conducted. Of 770 studies generated by the search, 10 met all inclusion criteria for this review. The most frequently reported barriers to engagement of B/AA people in biospecimen research were lack of biospecimen research awareness, fear of medical harm, and violation of personal health information privacy, resource constraints, and medical mistrust. Key facilitators included previous exposure to research, knowledge about underlying genetic causes of cancer, and altruism. Recommended strategies to increase participation of B/AA people in biospecimen-based research included community engagement, transparent communication, workforce diversity, education and training, and research participant incentives. Inclusion of B/AA people in biospecimen-based research has the potential to advance the promise of precision oncology for all patients and reduce racial disparities in cancer outcomes.
Assuntos
Negro ou Afro-Americano , Neoplasias , Seleção de Pacientes , Humanos , Pesquisa Biomédica , Neoplasias/etnologia , Neoplasias/terapiaRESUMO
BACKGROUND: The American Indian (AI) population in North Carolina has limited access to the Indian Health Service. Consequently, cancer burden and disparities may differ from national estimates. We describe the AI cancer population and examine AI-White disparities in cancer incidence and mortality. METHODS: We identified cancer cases diagnosed among adult AI and White populations between 2014 and 2018 from the North Carolina Central Cancer Registry. We estimated incidence and mortality rate ratios (IRR and MRR) by race. In addition, between the AI and White populations, we estimated the ratio of relative frequency differences [RRF, with 95% confidence limits (CL)] of clinical and sociodemographic characteristics. Finally, we evaluated the geographic distribution of incident diagnoses among AI populations. RESULTS: Our analytic sample included 2,161 AI and 204,613 White individuals with cancer. Compared with the White population, the AI population was more likely to live in rural areas (48% vs. 25%; RRF, 1.89; 95% CL, 1.81-1.97) and to have Medicaid (18% vs. 7%; RRF, 2.49; 95% CL, 2.27-2.71). Among the AI population, the highest age-standardized incidence rates were female breast, followed by prostate and lung and bronchus. Liver cancer incidence was significantly higher among the AI population than White population (IRR, 1.27; 95% CL, 1.01-1.59). AI patients had higher mortality rates for prostate (MRR, 1.72; CL, 1.09-2.70), stomach (MRR, 1.82; 95% CL, 1.15-2.86), and liver (MRR, 1.70; 95% CL, 1.25-2.33) cancers compared with White patients. CONCLUSIONS: To reduce prostate, stomach, and liver cancer disparities among AI populations in North Carolina, multi-modal interventions targeting risk factors and increasing screening and treatment are needed. IMPACT: This study identifies cancer disparities that can inform targeted interventions to improve outcomes among AI populations in North Carolina.