In this commentary, we discuss the science of stakeholder engagement in research. We propose a classification system with definitions to determine where projects lie on the stakeholder engagement ...continuum. We discuss the key elements of implementation and evaluation of stakeholder engagement in research posing key questions to consider when doing this work. We commend and critique the work of Hamilton et al. in their multilevel stakeholder engagement in a VA implementation trial of evidence-based quality improvement in women’s health primary care. We also discuss the need for more work in this area to enhance the science of stakeholder engagement in research.
We investigated the impact of reported racism on the mental health of African Americans at cross-sectional time points and longitudinally, over the course of 1 year.
The Black Linking Inequality, ...Feelings, and the Environment (LIFE) Study recruited Black residents (n = 144) from a probability sample of 2 predominantly Black New York City neighborhoods during December 2011 to June 2013. Respondents completed self-report surveys, including multiple measures of racism. We conducted assessments at baseline, 2-month follow-up, and 1-year follow-up. Weighted multivariate linear regression models assessed changes in racism and health over time.
Cross-sectional results varied by time point and by outcome, with only some measures associated with distress, and effects were stronger for poor mental health days than for depression. Individuals who denied thinking about their race fared worst. Longitudinally, increasing frequencies of racism predicted worse mental health across all 3 outcomes.
These results support theories of racism as a health-defeating stressor and are among the few that show temporal associations with health.
Abstract In June 2022, the NIH Office of Disease Prevention (ODP) issued a Call for Papers for a Supplemental Issue to Prevention Science on Design and Analytic Methods to Evaluate Multilevel ...Interventions to Reduce Health Disparities. ODP sought to bring together current thinking and new ideas about design and analytic methods for studies aimed at reducing health disparities, including strategies for balancing methodological rigor with design feasibility, acceptability, and ethical considerations. ODP was particularly interested in papers on design and analytic methods for parallel group- or cluster-randomized trials (GRTs), stepped-wedge GRTs, group-level regression discontinuity trials, and other methods appropriate for evaluating multilevel interventions. In this issue, we include 12 papers that report new methods, provide examples of strong applications of existing methods, or provide guidance on developing multilevel interventions to reduce health disparities. These papers provide examples showing that rigorous methods are available for the design and analysis of multilevel interventions to reduce health disparities.
Aim
Using a stakeholder‐engaged approach, this study conducted content validation and item reduction of a quantitative measure of research engagement.
Methods
A five‐round modified Delphi process was ...used to reach consensus on items. Rounds 1–3 and 5 were conducted using web‐based surveys. Round 4 consisted of a 2‐day, in‐person meeting. Delphi panelists received individualized reports outlining individual and aggregate group responses after rounds 1–3.
Results
Over the five‐round process, items were added, dropped, modified, and moved from one engagement principle to another. The number of items was reduced from 48 to 32, with three to five items corresponding to eight engagement principles.
Conclusions
Research that develops standardized, reliable, and accurate measures to assess stakeholder engagement is essential to understanding the impact of engagement on scientific discovery and the scientific process. Valid quantitative measures to assess stakeholder engagement in research are necessary to assess associations between engagement and research outcomes.
Abstract
There is limited literature on the measures and metrics used to examine racism in the health inequities literature. Health inequities research is continuously evolving, with the number of ...publications increasing over time. However, there is limited knowledge on the best measures and methods to examine the impact of different levels of racism (institutionalized, personally mediated, and internalized) on health inequities. Advanced statistical methods have the potential to be used in new ways to examine the relationship between racism and health inequities. In this review, we conduct a descriptive examination of the measurement of racism in the health inequities epidemiologic literature. We examine the study design, methods used for analysis, types of measures used (e.g., composite, absolute, relative), number of measures used, phase of research (detect, understand, solutions), viewpoint (oppressor, oppressed), and components of structural racism measures (historical context, geographical context, multifaceted nature). We discuss methods (e.g., Peters–Belson, latent class analysis, difference in differences) that have demonstrated potential for future work. The articles reviewed were limited to the detect (25%) and understand (75%) phases, with no studies in the solutions phase. Although the majority (56%) of studies had cross-sectional designs, many authors pointed to the need for longitudinal and multilevel data for further exploration. We examined study design features as mutually exclusive elements. However, racism is a multifaceted system and the measurement of racism in many studies does not fit into a single category. As the literature grows, the significance of methodological and measurement triangulation to assess racism should be investigated.
Introduction. Participation in the decision-making process and health literacy may both affect health outcomes; data on how these factors are related among diverse groups are limited. This study ...examined the relationship between health literacy and decision-making preferences in a medically underserved population. Methods. We analyzed a sample of 576 primary care patients. Multivariable logistic regression was used to examine the independent association of health literacy (measured by the Rapid Estimate of Adult Literacy in Medicine–Revised) and patients’ decision-making preferences (physician directed or patient involved), controlling for age, race/ethnicity, and gender. We tested whether having a regular doctor modified this association. Results. Adequate health literacy (odds ratio OR = 1.7; P = 0.009) was significantly associated with preferring patient-involved decision making, controlling for age, race/ethnicity, and gender. Having a regular doctor did not modify this relationship. Males were significantly less likely to prefer patient-involved decision making (OR = 0.65; P = 0.024). Discussion. Findings suggest health literacy affects decision-making preferences in medically underserved patients. More research is needed on how factors, such as patient knowledge or confidence, may influence decision-making preferences, particularly for those with limited health literacy.
Despite recognition of the importance of stakeholder input into research, there is a lack of validated measures to assess how well constituencies are engaged and their input integrated into research ...design. Measurement theory suggests that a community engagement measure should use clear and simple language and capture important components of underlying constructs, resulting in a valid measure that is accessible to a broad audience.
The primary objective of this study was to evaluate how community members understood and responded to a measure of community engagement developed to be reliable, valid, easily administered, and broadly usable.
Cognitive response interviews were completed, during which participants described their reactions to items and how they processed them. Participants were asked to interpret item meaning, paraphrase items, and identify difficult or problematic terms and phrases, as well as provide any concerns with response options while responding to 16 of 32 survey items.
The results of the cognitive response interviews of participants (N = 16) suggest concerns about plain language and literacy, clarity of question focus, and the lack of context clues to facilitate processing in response to items querying research experience. Minimal concerns were related to response options. Participants suggested changes in words and terms, as well as item structure.
Qualitative research can improve the validity and accessibility of measures that assess stakeholder experience of community-engaged research. The findings suggest wording and sentence structure changes that improve ability to assess implementation of community engagement and its impact on research outcomes.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
The increasing importance of genomic information in clinical care heightens the need to examine how individuals understand, value, and communicate about this information. Based on a conceptual ...framework of genomics-related health literacy, we examined whether health literacy was related to knowledge, self-efficacy, and perceived importance of genetics and family health history (FHH) and communication about FHH in a medically underserved population. The analytic sample was composed of 624 patients at a primary care clinic in a large urban hospital. About half of the participants (47%) had limited health literacy; 55% had no education beyond high school, and 58% were Black. In multivariable models, limited health literacy was associated with lower genetic knowledge (β = −0.55, SE = 0.10, p < .0001), lower awareness of FHH (odds ratio OR = 0.50, 95% confidence interval CI; 0.28, 0.90, p = .020), and greater perceived importance of genetic information (OR = 1.95, 95% CI 1.27, 3.00, p = .0022) but lower perceived importance of FHH information (OR = 0.47, 95% CI 0.26, 0.86, p = .013) and more frequent communication with a doctor about FHH (OR = 2.02, 95% CI 1.27, 3.23, p = .0032). The findings highlight the importance of considering domains of genomics-related health literacy (e.g., knowledge, oral literacy) in developing educational strategies for genomic information. Health literacy research is essential to avoid increasing disparities in information and health outcomes as genomic information reaches more patients.
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