Accelerating and Strengthening Native American Health Research Through a Collaborative NIH Initiative.

This paper is intended to provide an overview of the considerations that informed the development of a National Institutes of Health funding opportunity to promote health and prevent disease in Native Americans, including American Indian, Alaska Native, and Native Hawaiian communities. NIH Institute staff thoughtfully considered epidemiologic research findings and feedback from constituents regarding the need for more published research overall and stronger prevention efforts to address persistent health concerns affecting many Native communities. This led to the publication of four funding announcements supported by multiple NIH Institutes and one NIH Office. Through the efforts of researchers, tribal leaders, community collaborators, and NIH leadership and staff, a growing body of knowledge regarding culturally informed approaches to supporting health in Native Americans is emerging. This article describes how staff who developed the funding opportunities envisioned a process to support high impact science through ensuring methodological rigor, responsiveness to prevention needs, and respect for community heritage, values, and history with non-Native peoples. In addition, this article highlights the growth of the researchers and collaborators within a community of scientists expanding the knowledge base further by sharing their research resources, instruments, and strategies for engaging in scientific inquiry that meets the needs of Native communities and those of funding organizations.

Care delivery, patient experiences, and health outcomes among sexual and gender minority patients with cancer and survivors: A scoping review.

Sexual and gender minorities (SGMs) face a disproportionate burden of cancer, yet little is known about the experiences and specific needs of these underserved populations in cancer care delivery. The authors conducted a scoping review to characterize the literature on cancer care delivery, health outcomes, and health care experiences for patients with cancer and survivors identifying as SGM. In total, 1176 peer-reviewed citations were identified after a systematic search of the PubMed/Medline, PsycInfo, Cumulative Index of Nursing and Allied Health Literature (CINAHL), and Web of Sciences databases without restriction on publication date. The details captured included study aims, design, population, cancer site, and main findings. Thirty-seven studies published from 1998 to 2017 met the study criteria. Most studies were conducted in the post-treatment survivorship phase of the continuum (n = 30), and breast cancer was the most common cancer site (n = 20). There were only 2 intervention studies. The studies reviewed were classified under the following areas of focus: 1) disclosure of sexual orientation and gender identity, 2) quality of care, 3) psychosocial impact of/ adjustment to cancer, 4) social support, 5) sexual functioning, and 6) health risks/health behavior. Very little research reported an assessment of gender minority status or included a focus on gender minorities (n = 7). This review revealed substantial research gaps given a lack of population-based data and small sample sizes, likely related to the absence of systematic collection of sexual orientation and gender identity information in the cancer care context. Deficient research in this area likely perpetuates health disparities. Further research is needed to identify and remove the barriers to delivering high-quality care to SGM individuals with cancer.

Transdisciplinary cardiovascular and cancer health disparities training: experiences of the centers for population health and health disparities.

The Centers for Population Health and Health Disparities program promotes multilevel and multifactorial health equity research and the building of research teams that are transdisciplinary. We summarized 5 areas of scientific training for empowering the next generation of health disparities investigators with research methods and skills that are needed to solve disparities and inequalities in cancer and cardiovascular disease. These areas include social epidemiology, multilevel modeling, health care systems or health care delivery, community-based participatory research, and implementation science. We reviewed the acquisition of the skill sets described in the training components; these skill sets will position trainees to become leaders capable of effecting significant change because they provide tools that can be used to address the complexities of issues that promote health disparities.

Description of census-tract-level social determinants of health in cancer surveillance data.

BACKGROUND: Disparities in cancer incidence, stage at diagnosis, and mortality persist by race, ethnicity, and many other social determinants, such as census-tract-level socioeconomic status (SES), poverty, and rurality. Census-tract-level measures of these determinants are useful for analyzing trends in cancer disparities. METHODS: The purpose of this paper was to demonstrate the availability of the Surveillance, Epidemiology, and End Results Program's specialized census-tract-level dataset and provide basic descriptive cancer incidence, stage at diagnosis, and survival for 8 cancer sites, which can be screened regularly or associated with infectious agents. We present these analyses according to several census-tract-level measures, including the newly available persistent poverty as well as SES quintile, rurality, and race and ethnicity. RESULTS: Census tracts with persistent poverty and low SES had higher cancer incidence rates (except for breast and prostate cancer), higher percentages of cases diagnosed with regional or distant-stage disease, and lower survival than non-persistent-poverty and higher-SES tracts. Outcomes varied by cancer site when analyzing based on rurality as well as race and ethnicity. Analyses stratified by multiple determinants showed unique patterns of outcomes, which bear further investigation. CONCLUSIONS: This article introduces the Surveillance, Epidemiology, and End Results specialized dataset, which contains census-tract-level social determinants measures, including persistent poverty, rurality, SES quintile, and race and ethnicity. We demonstrate the capacity of these variables for use in producing trends and analyses focusing on cancer health disparities. Analyses may inform interventions and policy changes that improve cancer outcomes among populations living in disadvantaged areas, such as persistent-poverty tracts.

Advancing health equity in cancer survivorship research: National Institutes of Health 2017-2022 portfolio review.

BACKGROUND: Communities and researchers have called for a paradigm shift from describing health disparities to a health equity research agenda that addresses structural drivers. Therefore, we examined whether the cancer survivorship research portfolio has made this shift. METHODS: We identified grants focused on populations experiencing health disparities from the National Institutes of Health (NIH) Cancer Survivorship Research Portfolio (N = 724), Fiscal Years 2017-2022. Grant characteristics were abstracted, drivers of health disparities were mapped onto the levels and domains of influence, and opportunities for future research were identified. RESULTS: A total of 147 survivorship grants focused on health disparities were identified, of which 73.5% of grants focused on survivors from racial and ethnic minoritized groups, 25.9% living in rural areas, 24.5% socioeconomically disadvantaged, and 2.7% sexual and gender minority groups. Study designs were 51.0% observational; 82.3% of grants measured or intervened on at least 1 individual-level of influence compared to higher levels of influence (32.7% interpersonal, 41.5% institutional and community, and 12.2% societal). Behavioral and health care system domains of influence were commonly represented, especially at the individual level (47.6% and 36.1%, respectively). Less frequently represented was the physical and built environment (12.2%). CONCLUSIONS: NIH-funded cancer survivorship research on health disparities is still focused on individual level of influence. However, the proportion of grants examining structural and social drivers as well as the mechanisms that drive disparities in health care and health outcomes among cancer survivors have increased over time. Gaps in funded research on specific populations, cancer types, and focus areas of survivorship science were identified and warrant priority.

Advancing rapid cycle research in cancer care delivery: a National Cancer Institute workshop report.

Generating actionable research findings quickly and efficiently is critical for improving the delivery of cancer-related care and outcomes. To address this issue, the National Cancer Institute convened subject matter experts, researchers, clinicians, and patients for a 2-day virtual meeting in February 2022. The purpose of this meeting was to identify how rapid cycle interventional research methods can be used to generate findings useful in improving routine clinical practice. The meeting yielded an initial conceptualization of rapid cycle interventional research as being comprised of 6 key elements: use of iterative study designs; reliance on proximal primary outcomes; early and continued engagement with community and clinical partners; use of existing data sources to measure primary outcomes; facilitative features of the study setting and context; and consideration of appropriate rigor relative to intended use of findings. The meeting also identified the types of study designs that can be leveraged to conduct rapid cycle interventional research and provided examples of these; considered this approach from the perspective of key partners; described the clinical and data infrastructure, research resources, and key collaborations needed to support this work; identified research topics best addressed using this approach; and considered needed methodological advances. The National Cancer Institute is committed to exploring opportunities to encourage further development and application of this research approach as a means for better promoting improvements in the delivery of cancer-related care.

Cancer Epidemiology in Hispanic Populations: An Analysis of Funded Observational Research at the National Cancer Institute.

BACKGROUND: More than 62 million people self-identified as Hispanic/Latino (H/L) in the 2020 United States census. The U.S. H/L population has higher burden of certain cancers compared with their non-Hispanic White counterparts. METHODS: Key term search using the NIH Query/View/Report (QVR) system, along with Research, Condition, and Disease Categorization codes identified cancer epidemiology research grants in H/L populations funded by the NCI as a primary or secondary funder from fiscal years 2016 through 2021. Three reviewers identified eligible grants based on specified inclusion/exclusion criteria and a codebook for consistency extracting key characteristics. RESULTS: A total of 450 grants were identified through the QVR system using key words related to H/Ls; 41 cancer epidemiology grants remained after applying exclusion criteria. These grants contained specific aims focused on H/Ls (32%) or included H/Ls as part of a racial/ethnic comparison (68%). NCI was the primary funder of the majority of the grants (85%), and most of the research grants focused on cancer etiology (44%) and/or survivorship (49%). Few grants (10%) investigated environmental exposures. CONCLUSIONS: This article provides an overview of NCI-funded cancer epidemiology research in H/L populations from 2016 to 2021. Future cancer epidemiology research should reflect the changing dynamics of the U.S. demography with diverse, representative populations and well-characterized ethnicity. IMPACT: Research that carefully measures the relevant biological, environmental, behavioral, psychologic, sociocultural, and clinical risk factors will be critical to better understanding the nuanced patterns influencing cancer-related outcomes in the heterogenous H/L population.

Enduring Cancer Disparities by Persistent Poverty, Rurality, and Race: 1990-1992 to 2014-2018.

BACKGROUND: Most persistent poverty counties are rural and contain high concentrations of racial minorities. Cancer mortality across persistent poverty, rurality, and race is understudied. METHODS: We gathered data on race and cancer deaths (all sites, lung and bronchus, colorectal, liver and intrahepatic bile duct, oropharyngeal, breast and cervical [females], and prostate [males]) from the National Death Index (1990-1992; 2014-2018). We linked these data to county characteristics: 1) persistent poverty or not; and 2) rural or urban. We calculated absolute (range difference [RD]) and relative (range ratio [RR]) disparities for each cancer mortality outcome across persistent poverty, rurality, race, and time. RESULTS: The 1990-1992 RD for all sites combined indicated persistent poverty counties had 12.73 (95% confidence interval [CI] = 11.37 to 14.09) excess deaths per 100 000 people per year compared with nonpersistent poverty counties; the 2014-2018 RD was 10.99 (95% CI = 10.22 to 11.77). Similarly, the 1990-1992 RR for all sites indicated mortality rates in persistent poverty counties were 1.06 (95% CI = 1.05 to 1.07) times as high as nonpersistent poverty counties; the 2014-2018 RR was 1.07 (95% CI = 1.07 to 1.08). Between 1990-1992 and 2014-2018, absolute and relative disparities by persistent poverty widened for colorectal and breast cancers; however, for remaining outcomes, trends in disparities were stable or mixed. The highest mortality rates were observed among African American or Black residents of rural, persistent poverty counties for all sites, colorectal, oropharyngeal, breast, cervical, and prostate cancers. CONCLUSIONS: Mortality disparities by persistent poverty endured over time for most cancer outcomes, particularly for racial minorities in rural, persistent poverty counties. Multisector interventions are needed to improve cancer outcomes.

Persistent Poverty and Cancer Mortality Rates: An Analysis of County-Level Poverty Designations.

BACKGROUND: Cancer mortality is higher in counties with high levels of (current) poverty, but less is known about associations with persistent poverty. Persistent poverty counties (with ≥20% of residents in poverty since 1980) face social, structural, and behavioral challenges that may make their residents more vulnerable to cancer. METHODS: We calculated 2007 to 2011 county-level, age-adjusted, and overall and type-specific cancer mortality rates (deaths/100,000 people/year) by persistent poverty classifications, which we contrasted with mortality in counties experiencing current poverty (≥20% of residents in poverty according to 2007-2011 American Community Survey). We used two-sample t tests and multivariate linear regression to assess mortality by persistent poverty, and compared mortality rates across current and persistent poverty levels. RESULTS: Overall cancer mortality was 179.3 [standard error (SE) = 0.55] deaths/100,000 people/year in nonpersistent poverty counties and 201.3 (SE = 1.80) in persistent poverty counties (12.3% higher, P < 0.0001). In multivariate analysis, cancer mortality was higher in persistent poverty versus nonpersistent poverty counties for overall cancer mortality as well as for several type-specific mortality rates: lung and bronchus, colorectal, stomach, and liver and intrahepatic bile duct (all P < 0.05). Among counties experiencing current poverty, those counties that were also experiencing persistent poverty had elevated mortality rates for all cancer types as well as lung and bronchus, colorectal, breast, stomach, and liver and intrahepatic bile duct (all P < 0.05). CONCLUSIONS: Cancer mortality was higher in persistent poverty counties than other counties, including those experiencing current poverty. IMPACT: Etiologic research and interventions, including policies, are needed to address multilevel determinants of cancer disparities in persistent poverty counties.

Advancing Rural Cancer Control Research: National Cancer Institute Efforts to Identify Gaps and Opportunities.

Cancer mortality rates are approximately 8% higher in rural populations and mortality rates are falling more slowly in rural communities, resulting in widening rural-urban health disparities in the United States. The NCI has a long history of supporting health disparities research, including research to understand the health needs, strengths, and opportunities in rural communities. However, the portfolio analysis described in this article underscores the need to significantly accelerate rural cancer control research in partnership with state and local communities. This commentary outlines NCI's efforts over the last four years to address gaps in rural cancer control research and improve cancer prevention, control, and care delivery in rural populations. Future directions, challenges, and opportunities are also discussed.

Approaching health disparities from a population perspective: the National Institutes of Health Centers for Population Health and Health Disparities.

Addressing health disparities has been a national challenge for decades. The National Institutes of Health-sponsored Centers for Population Health and Health Disparities are the first federal initiative to support transdisciplinary multilevel research on the determinants of health disparities. Their novel research approach combines population, clinical, and basic science to elucidate the complex determinants of health disparities. The centers are partnering with community-based, public, and quasi-public organizations to disseminate scientific findings and guide clinical practice in communities. In turn, communities and public health agents are shaping the research. The relationships forged through these complex collaborations increase the likelihood that the centers' scientific findings will be relevant to communities and contribute to reductions in health disparities.

Perceived Deterrence of Cigarette Use and Smoking Status Among Active Duty Military Personnel.

BACKGROUND: Tobacco use in the military adversely affects fitness, readiness and performance levels, and increases health care costs. In 2011, cigarette use in the military was higher than in the civilian population (24.0% vs. 21.2%). We examined the perceptions of active duty service members with respect to supervisory and military installation determent of cigarette smoking. METHODS: Using the Department of Defense's 2011 Health-Related Behaviors Survey (HRBS) of active duty military personnel (N = 39,877) data, a multivariate logistic regression estimated the association of personnel's perception of leadership discouraging cigarette use with smoking status, controlling for covariates (n = 23,354). RESULTS: Those who perceived their supervisor as "Somewhat" (adjusted odds ratio [AOR] 1.41, 95% confidence interval [CI] [1.29, 1.54]) or "Strongly" (AOR 1.22, 95% CI [1.09, 1.37]) discouraging of cigarette use had higher odds of smoking compared to those who perceived supervisors "Not at all" discouraging use. Odds of currently smoking increased with perceptions of increasing discouragement by installation, from "Somewhat" (AOR 1.64, 95% CI [1.49, 1.80]) to "Strongly discourages" cigarette use (AOR 1.71, 95% CI [1.50, 1.95]). As expected, the strongest correlate of current smoking was having friends who smoke (AOR 13.62, 95% CI [11.53, 16.07]). Other significant covariates in the model focused on current smokers included high risk for alcohol problems, specifically hazardous drinking (AOR 2.57, 95% CI [2.25, 2.93]), harmful drinking (AOR 5.46, 95% CI [3.57, 8.35]), and possible alcohol dependence (AOR 1.43, 95% CI [1.07, 1.91]); being underweight (AOR 1.72, 95% CI [1.19, 2.53]); high anxiety (AOR 1.31, 95% CI [1.18, 1.46]); high anger (AOR 1.20, 95% CI [1.03, 1.39]); and high overall stress (AOR 1.17, 95% CI [1.07, 1.27]). Among the demographic covariates, higher rates of smoking were found in all levels of enlisted military rank, most notably among E1-E4 (AOR 7.22, 95% CI [5.64, 9.21]) and E4-E% (AOR 8.60, 95% CI [6.79, 10.91]); non-Air Force affiliation; longer length of combat experience; males; non-Hispanic whites; married personnel without a spouse present; job classifications in combat, administration, maintenance, or food service; and duty station in the continental United States. Additional analyses found that personnel with high overall stress were less likely to perceive their supervisor (odds ratio 0.67, 95% CI [0.62, 0.73]) and installation (odds ratio 0.69, 95% CI [0.63, 0.76]) as strongly discouraging smoking compared to those with low overall stress. CONCLUSION: Perceived influence of tobacco deterrence by military leadership is associated with smoking behaviors of active duty personnel. Paradoxically, those who perceived the strongest discouragement by military leadership had the highest rates of smoking. We hypothesize that current smokers may have a heightened awareness of antismoking messages and policies, and are more sensitive to threats that impinge upon freedom to smoke or aim to restrict a substance used for stress reduction. Results support military tobacco control efforts extending beyond individual-level approaches. A focus on multilevel influences of health behavior, emphasizing effective leadership, social and environmental changes, is needed to address military smoking behaviors.

Making the Case for Investment in Rural Cancer Control: An Analysis of Rural Cancer Incidence, Mortality, and Funding Trends.

Estimates of those living in rural counties vary from 46.2 to 59 million, or 14% to 19% of the U.S. POPULATION: Rural communities face disadvantages compared with urban areas, including higher poverty, lower educational attainment, and lack of access to health services. We aimed to demonstrate rural-urban disparities in cancer and to examine NCI-funded cancer control grants focused on rural populations. Estimates of 5-year cancer incidence and mortality from 2009 to 2013 were generated for counties at each level of the rural-urban continuum and for metropolitan versus nonmetropolitan counties, for all cancers combined and several individual cancer types. We also examined the number and foci of rural cancer control grants funded by NCI from 2011 to 2016. Cancer incidence was 447 cases per 100,000 in metropolitan counties and 460 per 100,000 in nonmetropolitan counties (P < 0.001). Cancer mortality rates were 166 per 100,000 in metropolitan counties and 182 per 100,000 in nonmetropolitan counties (P < 0.001). Higher incidence and mortality in rural areas were observed for cervical, colorectal, kidney, lung, melanoma, and oropharyngeal cancers. There were 48 R- and 3 P-mechanism rural-focused grants funded from 2011 to 2016 (3% of 1,655). Further investment is needed to disentangle the effects of individual-level SES and area-level factors to understand observed effects of rurality on cancer. Cancer Epidemiol Biomarkers Prev; 26(7); 992-7. ©2017 AACR.

Recommendations for Cancer Epidemiologic Research in Understudied Populations and Implications for Future Needs.

Medically underserved populations in the United States continue to experience higher cancer burdens of incidence, mortality, and other cancer-related outcomes. It is imperative to understand how health inequities experienced by diverse population groups may contribute to our increasing unequal cancer burdens and disparate outcomes. The National Cancer Institute convened a diverse group of scientists to discuss research challenges and opportunities for cancer epidemiology in medically underserved and understudied populations. This report summarizes salient issues and discusses five recommendations from the group, including the next steps required to better examine and address cancer burden in the United States among our rapidly increasing diverse and understudied populations. Cancer Epidemiol Biomarkers Prev; 25(4); 573-80. ©2016 AACR SEE ALL ARTICLES IN THIS CEBP FOCUS SECTION, "MULTILEVEL APPROACHES TO ADDRESSING CANCER HEALTH DISPARITIES".

Evolving partnerships in community.

In recent years there have been a significant number of publications on the benefits and challenges of community-based participatory research (CBPR). In this introduction we give an overview of three projects presented in this mini-monograph and highlight their commonalities and differences in developing community-university partnerships. While the studies presented here were not required to use CBPR strategies in their work, they did engage community members in a participatory manner. In this mini-monograph we examine how these multifaceted research questions are addressed while simultaneously negotiating complex relationships among researchers and communities as they strive for a more equitable partnership--not only in the distribution of resources but also in power/authority, the process of research, and its outcome. The three papers in this mini-monograph offer insights into various ways of forming, working, and sustaining community-university partnerships in conducting CBPR. They illustrate both the potential benefits and some of the challenges involved with establishing partnerships between community groups and researchers committed to the mutual goal of promoting environmental health. They suggest the importance of nonprescriptive frameworks for conducting community-based participatory research that focuses on more equitable power relationships to address health disparities to help alleviate environmental health problems.

Knowledge and practice: the risk of cardiovascular disease among Asian Indians. Results from focus groups conducted in Asian Indian communities in Northern California.

OBJECTIVE: The focus groups were utilized to gather information on the perceptions of cardiovascular risk within the Asian Indian community, and to identify opportunities to design health promotion and intervention programs for Asian Indian communities. DESIGN: Qualitative methods were utilized to obtain perceptions of cardiovascular risk within 3 Asian Indian communities. Eight focus groups were conducted in either English or Punjabi. SETTING: These focus groups were conducted as part of a 3-year community-based participatory research project examining cardiovascular risk factors among the Asian Indian population in Northern California. PARTICIPANTS: Focus group participants were selected through referrals from community-based organizations, postings in local community centers, and businesses. Fifty-seven men and women were recruited using snowball sampling. RESULTS: Six themes emerged from the focus groups: knowledge of cardiovascular disease, health and cultural concerns regarding diet, physical activity levels, stress as a factor for cardiovascular disease, acculturation concerns, and cardiovascular prevention ideas. CONCLUSIONS: The use of focus groups was an effective method for gathering information on perceptions of cardiovascular risk, and collecting information on risk behaviors within these Asian Indian communities. In this study, we found that psychosocial and cultural factors, especially cultural issues concerning stress and acculturation, surfaced as key elements across all 8 focus groups.