Dataset Information

Understanding Multilevel Factors Related to Urban Community Trust in Healthcare and Research.

ABSTRACT: BACKGROUND:Community and patient engagement in the healthcare system and biomedical research are prerequisites for eliminating health disparities. We conducted a "listening tour" to enhance our understanding of multilevel factors associated with community trust. METHODS:Using community-based participatory research (CBPR) methods, we conducted a phenomenological qualitative study. "Town-hall" style discussions were held at nine sites across an urban, Midwestern city. We recruited adults (N = 130) via community networks, social media, flyers, and word-of-mouth. Demographic assessments were self-administered and listening tour sessions were conducted by trained moderators. Themes were framed within the social ecological model (SEM; intrapersonal, interpersonal, institutional, community, and policy levels). RESULTS:Participants were mostly female (68%), African American (80%), had health coverage (97%) and were diagnosed with a chronic health condition (71%). The overarching theme was sociodemographic differences in distrust, such that African Americans and deaf/hearing impaired participants perceived disparities in healthcare, a lower quality of care, and skepticism about biomedical research, relative to Whites. CONCLUSIONS:The depth of distrust for healthcare providers, systems, and researchers in underserved communities remains strong and complex. Findings highlight the need to understand the lived experiences of community members, and how distrust is maintained. Multilevel interventions to increase trust and the accrual of underrepresented populations into clinical trials are needed.

SUBMITTER: Webb Hooper M

PROVIDER: S-EPMC6765868 | biostudies-other | 2019 Sep

REPOSITORIES: biostudies-other

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Understanding Multilevel Factors Related to Urban Community Trust in Healthcare and Research.

Webb Hooper Monica M Mitchell Charlene C Marshall Vanessa J VJ Cheatham Chesley C Austin Kristina K Sanders Kimberly K Krishnamurthi Smitha S Grafton Lena L LL

International journal of environmental research and public health 20190906 18

<h4>Background</h4>Community and patient engagement in the healthcare system and biomedical research are prerequisites for eliminating health disparities. We conducted a "listening tour" to enhance our understanding of multilevel factors associated with community trust.<h4>Methods</h4>Using community-based participatory research (CBPR) methods, we conducted a phenomenological qualitative study. "Town-hall" style discussions were held at nine sites across an urban, Midwestern city. We recruited a ...[more]

PMID: 31500126

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Project description:BackgroundPediatric sleep-disordered breathing (SDB) disproportionately affects children with low socioeconomic status (SES). The multilevel risk factors that drive these associations are not well understood.Research questionWhat are the associations between SDB risk factors, including individual health conditions (obesity, asthma, and allergies), household SES (maternal education), indoor exposures (environmental tobacco smoke [ETS] and pests), and neighborhood characteristics (neighborhood disadvantage), and pediatric SDB symptoms?Study design and methodsCross-sectional analyses were performed on 303 children (aged 6-12 years) enrolled in the Environmental Assessment of Sleep Youth study from 2018 to 2022. Exposures were determined by caregiver reports, assays of measured settled dust from the child's bedroom, and neighborhood-level Census data (deriving the Childhood Opportunity Index to characterize neighborhood disadvantage). The primary outcome was the SDB-related symptom burden assessed by the OSA-18 questionnaire total score. Using linear regression models, we calculated associations between exposures and SDB-related symptom burden, adjusting for sociodemographic factors, then health conditions, indoor environment, and neighborhood factors.ResultsThe sample included 303 children (39% Hispanic, Latino, Latina, or Spanish origin; 30% Black or African American; 22% White; and 11% other). Increasing OSA-18 total scores were associated with low household SES after adjustment for demographic factors, and with asthma, allergies, ETS, pests (mouse, cockroach, and rodents), and an indoor environmental index (sum of the presence of pests and ETS; 0-2) after adjusting for sociodemographic factors. Even after further adjusting for asthma, allergies, and neighborhood disadvantage, ETS and pest exposure were associated with OSA-18 (ETS: β = 12.80; 95% CI, 7.07-18.53, also adjusted for pest; pest exposure: β = 3.69; 95% CI, 0.44-6.94, also adjusted for ETS).InterpretationIn addition to associations with ETS, a novel association was observed for indoor pest exposure and SDB symptom burden. Strategies to reduce household exposure to ETS and indoor allergens should be tested as approaches for reducing sleep health disparities.

Project description:BackgroundHealthcare stakeholders have pronounced both enthusiasm and apprehension over the expanding use of real-world evidence (RWE). The patient community-those who benefit from new treatments but are vulnerable to potential safety risks and whose routine medical encounters are used to generate RWE-has been less vocal. Understanding patient perspectives on the use of RWE to guide clinical decision making and inform regulatory decisions and value assessments is imperative.MethodsWe convened a day-long, multi-stakeholder roundtable in Washington D.C., USA, on 31 July 2017 to gather patient-community views on RWE and related concerns and the communications, information and tools needed by patients to understand, trust, and use RWE. Participants included a convenience sample of National Health Council (NHC) members primarily representing patient groups as well as non-patient members with an interest in RWE. Participants were organized into small, pre-assigned groups, ensuring representativeness across stakeholders and patient leadership. Discussions, including storyboards, notes, and illustrative examples were captured and later analyzed thematically by NHC staff.ResultsTen RWE themes emerged: (1) most patients were unaware of RWE and its actual or potential uses, (2) common definitions for real-world data and RWE are needed, (3) patient organizations need RWE skills and tools, (4) patient-scientist partnerships can help differentiate high-quality RWE, (5) RWE should inform decision making, (6) clinician support is needed for RWE uptake in patient decision making, (7) communications to patients should be balanced and empowering, (8) context of use impacts RWE acceptability/trust, (9) privacy/data ownership require clarity, and (10) patient-generated data are also real-world data (RWD).ConclusionPatients see great possibility in using RWE to understand how a treatment works-to find someone that "looks like me" as assurance of how a treatment might benefit them personally. Patient groups will play a critical role in helping to educate constituents on understanding, contributing to, and using RWE. To maximize patient uptake and the co-development and application of RWE, patient groups require education and tools.

Dataset Information

Understanding Multilevel Factors Related to Urban Community Trust in Healthcare and Research.

Publications

Understanding Multilevel Factors Related to Urban Community Trust in Healthcare and Research.

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