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IDEAL: A Community-Academic-Governmental Collaboration Toward Improving Evidence-Based Data Collection on Race and Ethnicity

Kader, Farah; Ðoàn, Lan N; Chin, Matthew K; Scherer, Maya; Cárdenas, Luisa; Feng, Lloyd; Leung, Vanessa; Gundanna, Anita; Lee, Matthew; Russo, Rienna; Ogedegbe, Olugbenga G; John, Iyanrick; Cho, Ilseung; Kwon, Simona C; Yi, Stella S
PMCID:10599325
PMID: 37824700
ISSN: 1545-1151
CID: 5603912

Assessing Equitable Inclusion of Underrepresented Older Adults in Alzheimer's Disease, Related Cognitive Disorders, and Aging-Related Research: A Scoping Review

Godbole, Nisha; Kwon, Simona C; Beasley, Jeannette M; Roberts, Timothy; Kranick, Julie; Smilowitz, Jessica; Park, Agnes; Sherman, Scott E; Trinh-Shevrin, Chau; Chodosh, Joshua
BACKGROUND AND OBJECTIVES/OBJECTIVE:The rapidly aging and diversifying U.S. population is challenged by increases in prevalence of Alzheimer's disease (AD) and aging-related disorders. We conducted a scoping review to assess equitable inclusion of diverse older adult populations in aging research focused on National Institutes of Health (NIH)-sponsored research. RESEARCH DESIGN AND METHODS/METHODS:The scoping review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA-Scr) Protocol. The search was limited to NIH-funded studies focusing on aging, AD and Alzheimer's disease-related dementias (ADRD) and included adults aged 55+. The priority populations and health disparities put forth by the NIA Health Disparities Framework serve as a model for guiding inclusion criteria and for interpreting the representation of these underrepresented groups, including racial ethnic minorities, socioeconomically disadvantaged, rural populations, groups with disabilities, and LGBTQ communities. RESULTS:Our search identified 1,177 records, of which 436 articles were included in the analysis. Inclusion of individuals with ADRD and mild cognitive impairment, racial ethnic minorities, rural populations, socioeconomically disadvantaged, groups with disabilities, and LGBTQ communities were poorly specified in most studies. Studies used multiple recruitment methods, conducting studies in community settings (59%) and hospitals/clinics (38%) most frequently. Incentives, convenience factors, and sustained engagement via community-based and care partners were identified as key strategies for improved retention. DISCUSSION AND IMPLICATIONS/CONCLUSIONS:This scoping review identified gaps in existing literature and aims for future work, including stronger research focus on, better inclusion of, and improved data collection and reporting of older adults from underrepresented groups.
PMID: 35472166
ISSN: 1758-5341
CID: 5217412

Promoting Physical Activity Among Immigrant Asian Americans: Results from Four Community Health Worker Studies

Wyatt, Laura C; Katigbak, Carina; Riley, Lindsey; Zanowiak, Jennifer M; Ursua, Rhodora; Kwon, Simona C; Trinh-Shevrin, Chau; Islam, Nadia S
Racial/ethnic minorities have demonstrated lower rates of physical activity (PA) than non-Hispanic Whites. This study examined outcomes in PA measures after participation in a community health worker (CHW) intervention. We performed a secondary data analysis from four randomized controlled trials utilizing CHWs (n = 842) in New York City (Bangladeshi-diabetes management, Filipino-hypertension management, and Korean and Asian Indian-diabetes prevention). Outcomes included total weekly PA, PA self-efficacy, PA barriers, and PA social interaction. Each measure was examined at baseline and study endpoint. Generalized estimating equation models were fitted to assess the repeated measures over time, while accounting for study group and socio-demographic factors. Moderate PA, recommended PA, and self-efficacy increased significantly among treatment group participants. PA social interaction increased significantly among Filipinos and Asian Indians. In adjusted regression analysis, time x group interaction was significant for all PA outcomes except for PA barriers. Culturally-adapted lifestyle interventions may potentially improve PA-related outcomes in Asian immigrant communities. Trial registration at ClinicalTrials.gov includes: NCT03530579 (RICE Project), NCT02041598 (DREAM Project), and NCT03100812 (AsPIRE).
PMID: 36273386
ISSN: 1557-1920
CID: 5359162

A Culturally Adapted Breast and Cervical Cancer Screening Intervention Among Muslim Women in New York City: Results from the MARHABA Trial

Wyatt, Laura C; Chebli, Perla; Patel, Shilpa; Alam, Gulnahar; Naeem, Areeg; Maxwell, Annette E; Raveis, Victoria H; Ravenell, Joseph; Kwon, Simona C; Islam, Nadia S
We examine the efficacy of MARHABA, a social marketing-informed, lay health worker (LHW) intervention with patient navigation (PN), to increase breast and cervical cancer screening among Muslim women in New York City. Muslim women were eligible if they were overdue for a mammogram and/or a Pap test. All participants attended a 1-h educational seminar with distribution of small media health education materials, after which randomization occurred. Women in the Education + Media + PN arm received planned follow-ups from a LHW. Women in the Education + Media arm received no further contact. A total of 428 women were randomized into the intervention (214 into each arm). Between baseline and 4-month follow-up, mammogram screening increased from 16.0 to 49.0% in the Education + Media + PN arm (p < 0.001), and from 14.7 to 44.6% in the Education + Media arm (p < 0.001). Pap test screening increased from 16.9 to 42.3% in the Education + Media + PN arm (p < 0.001) and from 17.3 to 37.1% in the Education + Media arm (p < 0.001). Cancer screening knowledge increased in both groups. Between group differences were not statistically significant for screening and knowledge outcomes. A longer follow-up period may have resulted in a greater proportion of up-to-date screenings, given that many women had not yet received their scheduled screenings. Findings suggest that the educational session and small media materials were perhaps sufficient to increase breast and cervical cancer screening among Muslim American women. ClinicalTrials.gov NCT03081507.
PMID: 35585475
ISSN: 1543-0154
CID: 5249272

Principles to operationalize equity in cancer research and health outcomes: lessons learned from the cancer prevention and control research network

Chebli, Perla; Adsul, Prajakta; Kranick, Julie; Rohweder, Catherine L; Risendal, Betsy C; Bilenduke, Emily; Williams, Rebecca; Wheeler, Stephanie; Kwon, Simona C; Trinh-Shevrin, Chau
Reflecting their commitment to advancing health equity, the Cancer Prevention and Control Research Network (CPCRN) established a Health Equity Workgroup to identify and distill guiding principles rooted in health equity, community-engaged participatory research (CBPR), social determinants of health, and racial equity frameworks to guide its collective work. The Health Equity Workgroup utilized a multi-phase, participatory consensus-building approach to: (1) identify recurrent themes in health and racial equity frameworks; (2) capture perspectives on and experiences with health equity research among CPCRN members through an online survey; (3) engage in activities to discuss and refine the guiding principles; and (4) collect case examples of operationalizing equity principles in cancer research. Representatives from all CPCRN centers endorsed nine core principles to guide the Network's strategic plan: (1) Engage in power-sharing and capacity building with partners; (2) Address community priorities through community engagement and co-creation of research; (3) Explore and address the systems and structural root causes of cancer disparities; (4) Build a system of accountability between research and community partners; (5) Establish transparent relationships with community partners; (6) Prioritize the sustainability of research benefits for community partners; (7) Center racial equity in cancer prevention and control research; (8) Engage in equitable data collection, analysis, interpretation, and dissemination practices; and (9) Integrate knowledge translation, implementation, and dissemination into research plans. Dissemination products, such as toolkits and technical assistance workshops, reflecting these principles will foster knowledge transfer to intentionally integrate health and racial equity principles in cancer prevention and control research.
PMCID:9925365
PMID: 36781715
ISSN: 1573-7225
CID: 5427082

Looking Across and Within: Immigration as a Unifying Structural Factor Impacting Cardiometabolic Health and Diet

LeCroy, Madison N; Suss, Rachel; Russo, Rienna G; Sifuentes, Sonia; Beasley, Jeannette M; Barajas-Gonzalez, R Gabriela; Chebli, Perla; Foster, Victoria; Kwon, Simona C; Trinh-Shevrin, Chau; Yi, Stella S
INTRODUCTION/UNASSIGNED:Immigration has been identified as an important social determinant of health (SDH), embodying structures and policies that reinforce positions of poverty, stress, and limited social and economic mobility. In the public health literature with regard to diet, immigration is often characterized as an individual-level process (dietary acculturation) and is largely examined in one racial/ethnic subgroup at a time. For this narrative review, we aim to broaden the research discussion by describing SDH common to the immigrant experience and that may serve as barriers to healthy diets. METHODS/UNASSIGNED:A narrative review of peer-reviewed quantitative, qualitative, and mixed methods studies on cardiometabolic health disparities, diet, and immigration was conducted. RESULTS/UNASSIGNED:Cardiometabolic disease disparities were frequently described by racial/ethnic subgroups instead of country of origin. While cardiovascular disease and obesity risk differed by country of origin, diabetes prevalence was typically higher for immigrant groups vs United States (US)-born individuals. Common barriers to achieving a healthy diet were food insecurity; lack of familiarity with US food procurement practices, food preparation methods, and dietary guidelines; lack of familiarity and distrust of US food processing and storage methods; alternative priorities for food purchasing (eg, freshness, cultural relevance); logistical obstacles (eg, transportation); stress; and ethnic identity maintenance. CONCLUSIONS/UNASSIGNED:To improve the health of immigrant populations, understanding similarities in cardiometabolic health disparities, diet, and barriers to health across immigrant communities-traversing racial/ethnic subgroups-may serve as a useful framework. This framework can guide research, policy, and public health practices to be more cohesive, generalizable, and meaningfully inclusive.
PMCID:11145733
PMID: 38845741
ISSN: 1945-0826
CID: 5665812

Disaggregating Racial and Ethnic Data: A Step Toward Diversity, Equity, and Inclusion

Liang, Peter S; Kwon, Simona C; Cho, Ilseung; Trinh-Shevrin, Chau; Yi, Stella
PMID: 36822735
ISSN: 1528-0012
CID: 5427462

Disaggregating Racial and Ethnic Data: A Step Toward Diversity, Equity, and Inclusion [Editorial]

Liang, Peter S; Kwon, Simona C; Cho, Ilseung; Trinh-Shevrin, Chau; Yi, Stella
PMID: 36828600
ISSN: 1542-7714
CID: 5467622

Identifying research practices toward achieving health equity principles within the Cancer Prevention and Control Research Network

Adsul, Prajakta; Islam, Jessica; Chebli, Perla; Kranick, Julie; Nash, Sarah; Arem, Hannah; Wheeler, Stephanie; Lopez-Pentecost, Melissa; Foster, Victoria; Sharma, Rashmi K; Felder, Tisha; Risendal, Betsy; Chavarria, Enmanuel A; Kwon, Simona; Hirschey, Rachel; Trinh-Shevrin, Chau
PURPOSE/OBJECTIVE:Although there is national recognition for health equity-oriented research, there is limited guidance for researchers to engage partnerships that promote health equity in cancer research. The Cancer Prevention and Control Research Network's (CPCRN) Health Equity Work Group developed a toolkit to guide researchers in equitable collaborations. METHODS:The CPCRN's Health Equity Work Group collectively outlined health and racial equity principles guiding research collaborations with partners that include communities, community-based organizations, implementing partners in the clinical setting including providers and health care organizations, and policy makers. Using a network-wide survey to crowdsource information around ongoing practices, we leveraged and integrated the network's experience and collaborations. RESULTS:Data from the survey formed the preliminary basis for the toolkit, with a focus on sharing fiscal resources with partners, training and capacity building, collaborative decision-making, community-driven research agenda setting, and sustainability. The final toolkit provides reflection considerations for researchers and collated exemplary resources, supported by the contemporary research. CONCLUSIONS:The toolkit provides a guide to researchers at all experience levels wanting to engage in equitable research collaborations. Future efforts are underway to evaluate whether and how researchers within and outside CPCRN are able to incorporate these principles in research collaborations.
PMCID:9950692
PMID: 36826623
ISSN: 1573-7225
CID: 5434972

LOOKING ACROSS AND WITHIN: IMMIGRATION AS A UNIFYING STRUCTURAL FACTOR IMPACTING CARDIOMETABOLIC HEALTH AND DIET

LeCroy, Madison N.; Suss, Rachel; Russo, Rienna G.; Sifuentes, Sonia; Beasley, Jeannette M.; Barajas-Gonzalez, R. Gabriela; Chebli, Perla; Foster, Victoria; Kwon, Simona C.; Trinh-Shevrin, Chau; Yi, Stella S.
Introduction: Immigration has been identified as an important social determinant of health (SDH), embodying structures and policies that reinforce positions of poverty, stress, and limited social and economic mobility. In the public health literature with regard to diet, immigration is often characterized as an individual-level process (dietary acculturation) and is largely examined in one racial/ethnic subgroup at a time. For this narrative review, we aim to broaden the research discussion by describing SDH common to the immigrant experience and that may serve as barriers to healthy diets. Methods: A narrative review of peer-reviewed quantitative, qualitative, and mixed methods studies on cardiometabolic health disparities, diet, and immigration was conducted. Results: Cardiometabolic disease disparities were frequently described by racial/ethnic subgroups instead of country of origin. While cardiovascular disease and obesity risk differed by country of origin, diabetes prevalence was typically higher for immigrant groups vs United States (US)-born individuals. Common barriers to achieving a healthy diet were food insecurity; lack of familiarity with US food procurement practices, food preparation methods, and dietary guidelines; lack of familiarity and distrust of US food processing and storage methods; alternative priorities for food purchasing (eg, freshness, cultural relevance); logistical obstacles (eg, transportation); stress; and ethnic identity maintenance. Conclusions: To improve the health of immigrant populations, understanding similarities in cardiometabolic health disparities, diet, and barriers to health across immigrant communities"”traversing racial/ethnic subgroups"”may serve as a useful framework. This framework can guide research, policy, and public health practices to be more cohesive, generalizable, and meaningfully inclusive.
SCOPUS:85192082804
ISSN: 1049-510x
CID: 5662542