Factors associated with biomedical research participation within community-based samples across 3 National Cancer Institute-designated cancer centers.

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.

State and regional estimates using seven cycles of pooled nationally representative HINTS data.

BACKGROUND: The Health Information National Trends Survey (HINTS) is a probability-based, nationally representative survey conducted routinely to gather information about the American public's cancer-related beliefs and behaviors, including the use of cancer-related information. HINTS was created to produce national estimates and has lacked the ability to create accurate and precise state and regional estimates. The motivation for this current work was to create state- and regional-level estimates using a national sample (HINTS) through standard calibration methods. Health estimates at a local level can inform policy decisions that better target the cancer needs within a community. Local-level data allow researchers an opportunity to examine local populations in finer detail without additional costly data collection. METHODS: By combining seven cycles of HINTS data from 2012 to 2018 and then raking the previously created person-level weights, we were able to create tables and maps of HINTS subnational survey estimates for key outcomes that have small variances and little potential bias. RESULTS AND CONCLUSION: This paper describes the methods used to harmonize and aggregate data across cycles, create state- and regional-level estimates from the pooled data, and produce survey weights for the pooled datasets. It demonstrates both the opportunities and the challenges of pooled data analysis.

Challenges of virtual RDS for recruitment of sexual minority women for a behavioral health study.

Respondent driven sampling (RDS) is an approach commonly used to recruit nonprobability samples of rare and hard-to-find populations. The purpose of this study was to explore the utility of phone and web-based RDS methodology to sample sexual minority women (SMW) for participation in a telephone survey. Key features included 1) utilizing a national probability survey sample to select seeds; 2) web-based recruitment with emailed coupons; and 3) virtual processes for orienting, screening and scheduling potential participants for computer-assisted telephone interviews. Rather than resulting in a large diverse sample of SMW, only a small group of randomly selected women completed the survey and agreed to recruit their peers, and very few women recruited even one participant. Only seeds from the most recent of two waves of the probability study generated new SMW recruits. Three RDS attempts to recruit SMW over several years and findings from brief qualitative interviews revealed four key challenges to successful phone and web-based RDS with this population. First, population-based sampling precludes sampling based on participant characteristics that are often used in RDS. Second, methods that distance prospective participants from the research team may impede development of relationships, investment in the study, and motivation to participate. Third, recruitment for telephone surveys may be impeded by multiple burdens on seeds and recruits (e.g., survey length, understanding the study and RDS process). Finally, many seeds from a population-based sample may be needed, which is not generally feasible when working with a limited pool of potential seeds. This method may yield short recruitment chains, which would not meet key RDS assumptions for approximation of a probability sample. In conclusion, potential challenges to using RDS in studies with SMW, particularly those using virtual approaches, should be considered.

Differences in Breast and Colorectal Cancer Screening Adherence Among Women Residing in Urban and Rural Communities in the United States.

Importance: Screening for breast and colorectal cancer has resulted in reductions in mortality; however, questions remain regarding how these interventions are being diffused to all segments of the population. If an intervention is less amenable to diffusion, it could be associated with disparities in mortality rates, especially in rural vs urban areas. Objectives: To compare the prevalence of breast and colorectal cancer screening adherence and to identify factors associated with screening adherence among women residing in rural vs urban areas in the United States. Design, Setting, and Participants: This population-based cross-sectional study of women aged 50 to 75 years in 11 states was conducted from 2017 to 2020. Main Outcomes and Measures: Adherence to cancer screening based on the US Preventative Services Task Force guidelines. For breast cancer screening, women who had mammograms in the past 2 years were considered adherent. For colorectal cancer screening, women who had (1) a stool test in the past year, (2) a colonoscopy in the past 10 years, or (3) a sigmoidoscopy in the past 5 years were considered adherent. Rural status was coded using Rural Urban Continuum Codes, and other variables were assessed to identify factors associated with screening. Results: The overall sample of 2897 women included 1090 (38.4%) rural residents; 2393 (83.5%) non-Hispanic White women; 263 (9.2%) non-Hispanic Black women; 68 (2.4%) Hispanic women; 1629 women (56.2%) aged 50 to 64 years; and 712 women (24.8%) with a high school education or less. Women residing in urban areas were significantly more likely to be adherent to colorectal cancer screening compared with women residing in rural areas (1429 [82%] vs 848 [78%]; P = .01), whereas the groups were equally likely to be adherent to breast cancer screening (1347 [81%] vs 830 [81%]; P = .78). Multivariable mixed-effects logistic regression analyses confirmed that rural residence was associated with lower odds of being adherent to colorectal cancer screening (odds ratio [OR], 0.81; 95% CI, 0.66-0.99, P = .047). Non-Hispanic Black race was associated with adherence to breast cancer screening guidelines (OR, 2.85; 95% CI, 1.78-4.56; P < .001) but not colorectal cancer screening guidelines. Conclusions and Relevance: In this cross-sectional study, women residing in rural areas were less likely to be adherent to colorectal cancer screening guidelines but were similarly adherent to breast cancer screening. This suggests that colorectal cancer screening, a more recent intervention, may not be as available in rural areas as breast cancer screening, ie, colorectal screening has lower amenability.

An assessment of parents' childhood immunization beliefs, intentions, and behaviors using a smartphone panel.

INTRODUCTION: It is important to quickly identify parent beliefs, intentions, and behaviors toward childhood vaccination, especially parents of children 19 to 35 months. This paper describes parental immunization beliefs, intentions, and behaviors; assesses the relationships between beliefs and intentions regarding child immunization and actual behaviors; and assesses whether beliefs, intentions, and/or behaviors varied across demographic subgroups. METHODS: A sample of parents, ages 18 and older, from a mobile panel with people residing in the U.S. were invited to answer immunization behavior, intention, and belief questions using a smartphone app that was not vaccine specific. 10,000 panel members with a child under 18 were sent invitations. 1029 surveys were completed by a respondent with a child 19 to 35 months. The survey instrument replicated many NIS questions and had similar sequencing. FINDINGS: Respondents reported that most children received all recommended vaccines, except flu vaccine, suggesting some may not understand the immunization schedule. Demographics closely associated with immunization behaviors were respondents' education and household income. There is strong agreement that vaccines are effective, important to community health, and the child's health. There is concern about the number of shots received, disease prevention, and ingredient safety. Some belief remains about vaccines causing learning disabilities. Positive beliefs about the benefits of childhood vaccines and concomitant risks vary with demographics. CONCLUSIONS: This survey provided insights into beliefs and behaviors of parents regarding childhood vaccination. It found evidence of differences in beliefs, particularly related to delaying or declining recommended childhood vaccinations. The survey was conducted in a few days and at lower cost than traditional methods. This serves as a model for health agencies where rapid results or inexpensive approaches are needed.

Weighting Nonprobability and Probability Sample Surveys in Describing Cancer Catchment Areas.

BACKGROUND: The Population Health Assessment initiative by NCI sought to enhance cancer centers' capacity to acquire, aggregate, and integrate data from multiple sources, as well as to plan, coordinate, and enhance catchment area analysis activities. METHODS: Key objectives of this initiative are pooling data and comparing local data with national data. A novel aspect of analyzing data from this initiative is the methodology used to weight datasets from sites that collected both probability and nonprobability samples. This article describes the methods developed to weight data, which cancer centers collected with combinations of probability, and nonprobability sampling designs. RESULTS: We compare alternative weighting methods in particular for the hybrid probability and nonprobability sampling designs employed by different cancer centers. We also include comparisons of local center data with national survey data from large probability samples. CONCLUSIONS: This hybrid approach to calculating statistical weights can be implemented both within cancer centers that collect both probability and nonprobability samples with common measures. Aggregation can also apply to cancer centers that share common data elements, and target similar populations, but differ in survey sampling designs. IMPACT: Researchers interested in local versus national comparisons for cancer surveillance and control outcomes should consider various weighting approaches, including hybrid approaches, when analyzing their data.

A Feasibility Study on Using an Internet-Panel Survey to Measure Perceptions of E-cigarettes in 3 Metropolitan Areas, 2015.

OBJECTIVES: Internet-panel surveys are emerging as a means to quickly and cost-effectively collect health data, and because of their large memberships, they could be used for community-level surveys. To determine the feasibility of using an internet-panel survey to quickly provide community-level data, we conducted a pilot test of a health survey in 3 US metropolitan areas. METHODS: We conducted internet-panel surveys in Cleveland, Ohio; New York, New York; and Seattle, Washington, in 2015. Slightly more than 500 people responded to the survey in each city. We compared weighted unadjusted prevalence estimates from the internet-panel data with estimates from the 2014 Health Information National Trends Survey (HINTS) for the following question in each survey: "Compared to smoking cigarettes, would you say that electronic cigarettes are…much less harmful, less harmful, just as harmful, more harmful, much more harmful, or I've never heard of electronic cigarettes." We used multivariable logistic regression to compare associations of respondents' demographic and health characteristics with perceived harm from e-cigarettes. RESULTS: The prevalence of the perception that e-cigarettes are less harmful than smoking cigarettes ranged from 35.9% to 39.9% in the internet-panel sites and was 43.0% in HINTS. Most patterns of beliefs and respondent characteristics in the internet-panel data were consistent with patterns in HINTS. We found inconsistent patterns between internet-panel sites and HINTS by race/ethnicity and education. CONCLUSIONS: This feasibility study found that internet-panel surveys could quickly produce community-level data for targeted public health interventions and evaluation, but they may be limited in producing estimates among subgroups.