Associate Dean for Research
Professor of Biostatistics
Dr. Melody Goodman’s efforts seek to understand the social risk factors that contribute to health disparities in urban areas, with the goal of developing culturally competent, region-specific, and evidence-based solutions through collaborative activities with community members, community-based organizations, faith-based organizations, and other community health stakeholders. The purpose of her work is the development of solutions for improving health in minority and medically underserved communities.
Dr. Goodman conducts applied biostatistical and survey research for community-based interventions and health disparities research with a strong focus on measurement. Additionally, through academic-community collaborations, she implements, evaluates, and enhances the infrastructure of community-engaged research, in order to mitigate health disparities. As such, Dr. Goodman is the Principal Investigator of a Patient-Centered Outcomes Research Institute (PCORI) grant that aims to validate and implement a quantitative survey measure to assess the level of community engagement in patient-centered outcomes research (PCOR) and clinical effectiveness research (CER) studies from the community stakeholder perspective.
Previously, Dr. Goodman has been subcontracted by the National Human Genome Research Institute/NIH to analyze patterns of beliefs about the genetic causation of health conditions and health behaviors among community health center patients. She was the Principal Investigator on a NIH Partners in Research grant entitled Community Alliance for Research Empowering Social change (CARES). With numerous funders supporting her work, she has published over 70 peer-reviewed journal articles.
BS, Economics and Applied Mathematics & Statistics, State University of New York at Stony Brook, Stony Brook, NYMS, Biostatistics, Harvard University, Cambridge, MAPhD, Biostatistics (Minors: Social Determinants of Health Disparities and Theoretical Statistics), Harvard University, Cambridge, MA
Siteman Cancer Center “Rock Doc” (2013)Satcher Health Leadership Institute - Morehouse School of Medicine, Community Health Leadership Institute Intensive Cohort II (2013)Women of the Year - Health, National Coalition of 100 Black Women, Inc. - Suffolk Chapter (2010)President’s Award for Teaching Excellence - Stony Brook University (2009)President’s Award for Excellence in Team Achievement - Stony Brook University (2008)
BiostatisticsCommunity HealthCommunity-based Participatory ResearchDissemination and Implementation of Evidence-based ProgramsHealth DisparitiesHealth EquityMinoritiesMinority HealthQuantitative Research
A pilot pragmatic trial of a “what matters most”-based intervention targeting intersectional stigma related to being pregnant and living with HIV in BotswanaYang, L. H., Eschliman, E. L., Mehta, H., Misra, S., Poku, O. B., Entaile, P., Becker, T. D., Melese, T., Brooks, M. J., Eisenberg, M., Stockton, M. A., Choe, K., Tal, D., Li, T., Go, V. F., Link, B. G., Rampa, S., Jackson, V. W., Manyeagae, G. D., Arscott-Mills, T., Goodman, M., Opondo, P. R., Ho-Foster, A. R., & Blank, M. B. (n.d.).
Journal titleAIDS Research and Therapy
Issue1AbstractWe conducted a pilot trial of an intervention targeting intersectional stigma related to being pregnant and living with HIV while promoting capabilities for achieving ‘respected motherhood’ (‘what matters most’) in Botswana. A pragmatic design allocated participants to the intervention (N = 44) group and the treatment-as-usual (N = 15) group. An intent-to-treat, difference-in-difference analysis found the intervention group had significant decreases in HIV stigma (d = − 1.20; 95% CI − 1.99, − 0.39) and depressive symptoms (d = − 1.96; 95% CI − 2.89, − 1.02) from baseline to 4-months postpartum. Some, albeit less pronounced, changes in intersectional stigma were observed, suggesting the importance of structural-level intervention components to reduce intersectional stigma.
A Study Examining the Usefulness of a New Measure of Research EngagementBowen, D. J., Ackermann, N., Thompson, V. S., Nederveld, A., & Goodman, M. (n.d.).
Journal titleJournal of general internal medicine
Page(s)50-56AbstractIntroduction: Engagement of relevant stakeholders’ ideas, opinions, and concerns is critical to the success of modern research projects. We have developed a tool to measure stakeholder engagement, called the Research Engagement Survey Tool (REST). The purpose of this paper is to present the implementation and uptake of the stakeholder engagement measure REST among research teams, including the assessment of barriers and facilitating factors for use of the new research engagement measure in practice. Methods: In this implementation study, project team members participated in baseline and follow-up web-based surveys. Web-based interviews were conducted with a subset of project teams that implemented the REST. On the baseline survey, project teams were asked to provide details about up to three ongoing or recently completed projects, were asked if they agreed with compensation for REST completion, and were asked if they would like to send the survey to stakeholders or would prefer our project team to email their project stakeholders. Follow-up surveys contained questions on reactions to implementing REST and results of REST. Results: Project team members/researchers who completed the baseline survey (n=86) were mostly female (79%) and Non-Hispanic/Latino(a) White (76%). Those who implemented REST were also mostly female (86%) and Non-Hispanic/Latino(a) White (71%), with an average of 11 years in academic research. About 98% of all participants completing the baseline survey had the capacity to survey partners, while 100% of all teams who implemented REST did. A small portion of respondents indicated the time commitment of REST would be a barrier (29% of baseline survey respondents, 10% of those who implemented REST) and indicated workload would be a barrier (31% of baseline survey respondents, 14% of those who implemented REST). Discussion: The data presented here indicate that REST implementation is feasible in a volunteer group of ongoing research projects.
Acculturation and Depressive Symptoms Among Dominicans in New York CityHagen, D., Goldmann, E., Parikh, N. S., Goodman, M., & Boden-Albala, B. (n.d.).
Journal titleJournal of Immigrant and Minority Health
Page(s)1186-1195AbstractLittle is known about the association between acculturation and mental health among Dominican populations in the United States. Data came from a community survey of Dominican residents of New York City (n = 2744). Associations between two indicators of acculturation, proportion of life spent in the U.S. and interview language (English/Spanish), with lifetime depressive symptoms (Patient Health Questionnaire-9 score ≥ 5) were examined using logistic regression overall and by gender. In adjusted models, respondents with English-language interview and above-median proportion of life spent in the U.S. had 77% higher odds (95% CI 1.28, 2.44) of lifetime depressive symptoms than those with Spanish-language interview and below-median proportion of life spent in the U.S. There was some evidence of elevated odds of depressive symptoms among men with English-language interview and below-median proportion of life spent in the U.S. Additional research is needed to elucidate gender-specific impacts of acculturation on mental health in this population.
Construct validation of the Research Engagement Survey Tool (REST)Goodman, M. S., Ackermann, N., Haskell-Craig, Z., Jackson, S., Bowen, D. J., & Sanders Thompson, V. L. (n.d.).
Journal titleResearch Involvement and Engagement
Issue1AbstractBackground: The Research Engagement Survey Tool (REST) was developed to examine the level of partner (e.g., patients, caregivers, advocates, clinicians, community members) engagement in research studies. The REST is aligned with eight engagement principles based on the literature and consensus reached through a five round Delphi process. Each of the engagement principles has three-five corresponding items that are assessed on two Likert type scales quantity (how often: never, rarely, sometimes, often, always, not applicable) and quality (how well: poor, fair, good, very good, excellent, not applicable). We conducted a comprehensive validation of the REST. Despite the importance of partner engagement in research, currently no gold standard measure exists. Methods: Multiple strategies were employed to validate the REST. Here, we examine the internal consistency of items for each of the eight engagement principles. In addition, we examine the convergent validity of the comprehensive (32-item) REST with other measures (e.g., medical mistrust, Community Engagement in Research Index, Partnership Self-Assessment Tool, Wilder collaboration inventory, Partnership Assessment In community-based Research). We propose two scoring approaches for the REST; one aligned with the engagement principles and the other aligned with levels of community engagement: (1) outreach and education, (2) consultation, (3) cooperation, (4) collaboration, and (5) partnership. Results: The REST has strong internal consistency (Cronbach’s alpha > 0.75) for each of the eight engagement principals measured on both scales (quality and quantity). The REST had negligible (e.g., medical mistrust, community engagement in research index), low (e.g., Partnership Assessment In community-based Research, Partnership Self-Assessment Tool- benefits scale), and moderate (e.g., Wilder collaboration inventory, Partnership Self-Assessment Tool- synergy scale) statistically significant correlations with other measures based on the Spearman rank correlation coefficient. These results suggest the REST is measuring something similar and correlated to the existing measures, but it captures a different construct (perceived research engagement). Conclusions: The REST is a valid and reliable tool to assess research engagement of community health stakeholders in the research process. Valid tools to assess research engagement are necessary to examine the impact of engagement on the scientific process and scientific discovery and move the field of stakeholder engagement from best practices and lessons learned to evidence-based approaches based on empirical data.
Copycat and lookalike edible cannabis product packaging in the United StatesOmpad, D. C., Snyder, K. M., Sandh, S., Hagen, D., Collier, K. J., Goldmann, E., Goodman, M. S., & Tan, A. S. (n.d.).
Journal titleDrug and alcohol dependence
Volume235AbstractBackground: Recent media reports have highlighted copycat/lookalike cannabis edibles as a public health concern. No empirical papers have described this phenomenon. Methods: From May 2020-August 2021, we collected photos of cannabis products via an online survey of cannabis users and through personal contacts. Copycat/lookalike products are defined as those that use the same or similar brand name, logo, and/or imagery as an existing commercial non-cannabis counterpart (CNCC). We assessed each package for similarities with its CNCC with respect to brand name, product name, font, color, flavors, and brand/promotional characters. We examined cannabis content indicators including: THC content per package and serving, cannabis leaf symbol, product warnings, cannabis terms, cannabis motifs, activation time, and guidance on edible use. Results: We collected photos of 731 cannabis products; 267 (36%) were edibles of which 22 (8%) represented 13 unique copycat/lookalike products. Eight used exact brand/product names as existing CNCCs, and five used similar names. Packages copied or imitated a mean of 3.9 of six features and indicated cannabis content with a mean of 4.1 of eight features. Thirteen packages indicated a mean THC content of 459 mg/package. Four reported THC dose per serving, with a mean dose of 47.5 mg. Conclusions: Our content analysis highlights three key concerns. First, copycat/lookalike edibles subtly indicate cannabis content while using high fidelity replication or imitation of their CNCC. Second, THC content is high and there were multiple 10 mg THC doses in the equivalent of 1 serving of a CNCC. Third, these products may be attractive to children.
GARDE: A standards-based clinical decision support platform for identifying population health management cohortsBradshaw, R. L., Kawamoto, K., Kaphingst, K. A., Kohlmann, W. K., Hess, R., Flynn, M. C., Nanjo, C. J., Warner, P. B., Shi, J., Morgan, K., Kimball, K., Ranade-Kharkar, P., Ginsburg, O., Goodman, M., Chambers, R., Mann, D., Narus, S. P., Gonzalez, J., Loomis, S., Chan, P., Monahan, R., Borsato, E. P., Shields, D. E., Martin, D. K., Kessler, C. M., & Del Fiol, G. (n.d.).
Journal titleJournal of the American Medical Informatics Association
Page(s)928-936AbstractPopulation health management (PHM) is an important approach to promote wellness and deliver health care to targeted individuals who meet criteria for preventive measures or treatment. A critical component for any PHM program is a data analytics platform that can target those eligible individuals. Objective: The aim of this study was to design and implement a scalable standards-based clinical decision support (CDS) approach to identify patient cohorts for PHM and maximize opportunities for multi-site dissemination. Materials and Methods: An architecture was established to support bidirectional data exchanges between heterogeneous electronic health record (EHR) data sources, PHM systems, and CDS components. HL7 Fast Healthcare Interoperability Resources and CDS Hooks were used to facilitate interoperability and dissemination. The approach was validated by deploying the platform at multiple sites to identify patients who meet the criteria for genetic evaluation of familial cancer. Results: The Genetic Cancer Risk Detector (GARDE) platform was created and is comprised of four components: (1) an open-source CDS Hooks server for computing patient eligibility for PHM cohorts, (2) an open-source Population Coordinator that processes GARDE requests and communicates results to a PHM system, (3) an EHR Patient Data Repository, and (4) EHR PHM Tools to manage patients and perform outreach functions. Site-specific deployments were performed on onsite virtual machines and cloud-based Amazon Web Services. Discussion: GARDE's component architecture establishes generalizable standards-based methods for computing PHM cohorts. Replicating deployments using one of the established deployment methods requires minimal local customization. Most of the deployment effort was related to obtaining site-specific information technology governance approvals.
Impact of education on APOL1 testing attitudes among prospective living kidney donorsNestor, J. G., Li, A. J., King, K. L., Husain, S. A., McIntosh, T. J., Sawinski, D., Iltis, A. S., Goodman, M. S., Walsh, H. A., DuBois, J. M., & Mohan, S. (n.d.).
Journal titleClinical Transplantation
Issue1AbstractIt is unknown how providing prospective living donors with information about APOL1, including the benefits and drawbacks of testing, influences their desire for testing. In this study, we surveyed 102 participants with self-reported African ancestry and positive family history of kidney disease, recruited from our nephrology waiting room. We assessed views on APOL1 testing before and after presentation of a set of potential benefits and drawbacks of testing and quantified the self-reported level of influence individual benefits and drawbacks had on participants’ desire for testing in the proposed context of living donation. The majority of participants (92%) were aware of organ donation and more than half (56%) had considered living donation. And though we found no significant change in response following presentation of the potential benefits and the drawbacks of APOL1 testing by study end significance, across all participants, “becoming aware of the potential risk of kidney disease among your immediate family” was the benefit with the highest mean influence (3.3±1.4), while the drawback with the highest mean influence (2.9±1.5) was “some transplant centers may not allow you to donate to a loved one”. This study provides insights into the priorities of prospective living donors and suggests concern for how the information affects family members may strongly influence desires for testing. It also highlights the need for greater community engagement to gain a deeper understanding of the priorities that influence decision making on APOL1 testing.
Presence of Content Appealing to Youth on Cannabis-Infused Edibles PackagingTan, A. S., Weinreich, E., Padon, A., Sanchez, M., Snyder, K. M., Vasilyeva, A., Sandh, S., Goldmann, E., Goodman, M., & Ompad, D. C. (n.d.).
Journal titleSubstance Use and Misuse
Page(s)1215-1219AbstractBackground: There is a lack of consistent regulation of cannabis edibles packaging to restrict youth-appealing content in the United States. Objective: To describe content appealing to youth on U.S. cannabis-infused edibles packaging. Methods: We analyzed 256 photos of cannabis-infused edibles packaging collected from U.S. adults from 25 states, District of Columbia, and Puerto Rico between May 2020 to August 2021. We coded the presence of product knockoffs, human and non-human creatures, images indicating flavor, text indicating flavor, and the number of colors. We compared these codes across states’ legalization status (medical and non-medical cannabis, medical cannabis only, or limited cannabis legalization). Results: Overall, 15% of packages resembled product knockoffs, 23% contained human/non-human creatures, 35% contained flavor images, 91% contained flavor text, and median number of colors was 5 (range from 1 to 10+). Packages purchased in states with medical and non-medical cannabis, medical cannabis only, or limited cannabis legalization differed significantly on product knockoffs (11%, 26%, 38%, p = 0.007), human/non-human creatures (19%, 33%, 63%, p = 0.002), flavor text (93%, 81%, 100%, p = 0.046), and number of colors (median of 5, 5, and 10, p = 0.022). Conclusions: Existing laws have not adequately limited content appealing to youth on U.S. cannabis-infused edibles packaging. Robust and consistent regulations in the U.S. are needed to ensure that the packaging of such products does not contain content that appeal to youth and lead to initiation or inadvertent ingestion.
Racial and ethnic disparities in communication study enrollment for young people with cancer: A descriptive analysis of the literatureSisk, B. A., Keenan, M., Goodman, M. S., Servin, A. E., Yaeger, L. H., Mack, J. W., & DuBois, J. M. (n.d.).
Journal titlePatient Education and Counseling
Page(s)2067-2073AbstractObjective: We aimed to evaluate the racial and ethnic diversity of study participants in recent pediatric cancer communication literature. Methods: We systematically searched for communication studies in pediatric oncology published between January 2018 and September 2020, limiting analysis to US studies. We considered race and ethnicity as separate categories in our analysis. Two authors screened studies and abstracted characteristics of race and ethnicity reporting and enrollment. Results: Of 98 articles included in this analysis, many studies failed to report participants’ race (21/98) and ethnicity (40/98). Most studies ascertained race and ethnicity by self-report (51/98); 25 studies did not describe how they ascertained race and ethnicity. White participants were overrepresented in studies relative to the US population (median 80% in studies vs 72% in 2020 US census). Racial and ethnic minorities were underrepresented (Black: 7% vs 14%; Asian: 4% vs 7%; Pacific Islander: 0% vs 0.5%; Native American: 0.5% vs 3%; Hispanic 8% vs 19%). Conclusion: Communication literature in pediatric oncology underrepresents all racial and ethnic minority populations and is inconsistent in the reporting of race and ethnicity. Practice implications: Future work should follow best practices to ensure this literature adequately represents the experiences of all families in pediatric oncology.
Racial and Ethnic Diversity Among Students, Graduates, and Faculty in Biostatistics and Epidemiology, 2010-2020Goodman, M. S., Bather, J. R., Chu, X., Pagano, M., Plepys, C. M., & Sebro, R. A. (n.d.).
Journal titlePublic Health ReportsAbstractObjective: This study is a follow-up to a study in 2020 that reviewed changes in the racial and ethnic composition of public health students, graduates, and faculty among Association of Schools and Programs of Public Health (ASPPH)–member institutions. In the current study, we evaluated how the racial and ethnic composition among biostatistics and epidemiology students, graduates, and faculty changed from 2010 to 2020. Methods: We analyzed data on race and ethnicity of enrolled graduate students, graduates (master’s and doctoral), and faculty at ASPPH-member institutions by using institutionally reported data from the ASPPH Data Center. We tabulated frequencies, percentages, and percentage-point changes by race and ethnicity. We measured differences between groups by using a test for difference in 2 proportions. Results: The number of enrolled students, graduates, and faculty in all departments increased during the study period, while the number of tenure-track faculty in biostatistics decreased. The percentage of enrolled Hispanic/Latino biostatistics graduate students increased from 5.6% in 2010 to 10.2% in 2020 (P =.007), and the percentage of epidemiology graduates increased from 8.8% to 13.8% (P =.008). We found no differences among other underrepresented racial and ethnic groups. Most biostatistics and epidemiology professors at all ranks were non-Hispanic White, despite substantial decreases. The percentage of underrepresented racial and ethnic minority biostatistics and epidemiology professors was constant across all ranks. Conclusion: Although more Hispanic/Latino students are enrolled in and graduating from biostatistics and epidemiology departments at ASPPH-member institutions, we found no change among faculty. More work is needed to recruit and retain other (American Indian/Alaska Native, Black or African American, Native Hawaiian/Other Pacific Islander) underrepresented students and faculty.
Racial Disparities in Breast Reconstruction at a Comprehensive Cancer CenterConnors, S. K., Goodman, M. S., Myckatyn, T., Margenthaler, J., & Gehlert, S. (n.d.).
Journal titleJournal of Racial and Ethnic Health Disparities
Page(s)2323-2333AbstractIntroduction: Breast reconstruction after a mastectomy is an important component of breast cancer care that improves the quality of life in breast cancer survivors. African American women are less likely to receive breast reconstruction than Caucasian women. The purpose of this study was to further investigate the reconstruction disparities we previously reported at a comprehensive cancer center by assessing breast reconstruction rates, patterns, and predictors by race. Methods: Data were obtained from women treated with definitive mastectomy between 2000 and 2012. Sociodemographic, tumor, and treatment characteristics were compared between African American and Caucasian women, and logistic regression was used to identify significant predictors of reconstruction by race. Results: African American women had significantly larger proportions of public insurance, aggressive tumors, unilateral mastectomies, and modified radical mastectomies. African American women had a significantly lower reconstruction rate (35% vs. 49%, p < 0.01) and received a larger proportion of autologous reconstruction (13% vs. 7%, p < 0.01) compared to Caucasian women. The receipt of adjuvant radiation therapy was a significant predictor of breast reconstruction in Caucasian but not African American women. Conclusions: We identified breast reconstruction disparities in rate and type of reconstruction. These disparities may be due to racial differences in sociodemographic, tumor, and treatment characteristics. The predictors of breast reconstruction varied by race, suggesting that the mechanisms underlying breast reconstruction may vary in African American women. Future research should take a target approach to examine the relative contributions of sociodemographic, tumor, and treatment determinants of the breast reconstruction disparities in African American women.
Understanding the Use of Optimal Formatting and Plain Language When Presenting Key Information in Clinical TrialsSolomon, E. D., Mozersky, J., Wroblewski, M. P., Baldwin, K., Parsons, M. V., Goodman, M., & DuBois, J. M. (n.d.).
Journal titleJournal of Empirical Research on Human Research Ethics
Page(s)177-192AbstractRecent revisions to the Common Rule require that consent documents begin with a focused presentation of the study's key information that is organized to facilitate understanding. We surveyed 1,284 researchers working with older adults or individuals with Alzheimer's disease, supplemented with 60 qualitative interviews, to understand current use and barriers to using evidence-based formatting and plain language in key information. Researchers reported using formatting in 42% of their key information sections, and plain language in 63% of their key information sections. Perceived barriers included lack of knowledge, Institutional Review Board, other members of their team, and the burden associated with implementation. Education and training are required to increase adoption of the practices.
Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchersMozersky, J., McIntosh, T., Walsh, H. A., Parsons, M. V., Goodman, M., & DuBois, J. M. (n.d.).
Journal titlePloS one
Issue12AbstractQualitative health data are rarely shared in the United States (U.S.). This is unfortunate because gathering qualitative data is labor and time-intensive, and data sharing enables secondary research, training, and transparency. A new U.S. federal policy mandates data sharing by 2023, and is agnostic to data type. We surveyed U.S. qualitative researchers (N = 425) on the barriers and facilitators of sharing qualitative health or sensitive research data. Most researchers (96%) have never shared qualitative data in a repository. Primary concerns were lack of participant permission to share data, data sensitivity, and breaching trust. Researcher willingness to share would increase if participants agreed and if sharing increased the societal impact of their research. Key resources to increase willingness to share were funding, guidance, and de-identification assistance. Public health and biomedical researchers were most willing to share. Qualitative researchers need to prepare for this new reality as sharing qualitative data requires unique considerations.
Comparing models of delivery for cancer genetics services among patients receiving primary care who meet criteria for genetic evaluation in two healthcare systems: BRIDGE randomized controlled trialFailed generating bibliography.Abstract
Journal titleBMC health services research
Issue1AbstractBackground: Advances in genetics and sequencing technologies are enabling the identification of more individuals with inherited cancer susceptibility who could benefit from tailored screening and prevention recommendations. While cancer family history information is used in primary care settings to identify unaffected patients who could benefit from a cancer genetics evaluation, this information is underutilized. System-level population health management strategies are needed to assist health care systems in identifying patients who may benefit from genetic services. In addition, because of the limited number of trained genetics specialists and increasing patient volume, the development of innovative and sustainable approaches to delivering cancer genetic services is essential. Methods: We are conducting a randomized controlled trial, entitled Broadening the Reach, Impact, and Delivery of Genetic Services (BRIDGE), to address these needs. The trial is comparing uptake of genetic counseling, uptake of genetic testing, and patient adherence to management recommendations for automated, patient-directed versus enhanced standard of care cancer genetics services delivery models. An algorithm-based system that utilizes structured cancer family history data available in the electronic health record (EHR) is used to identify unaffected patients who receive primary care at the study sites and meet current guidelines for cancer genetic testing. We are enrolling eligible patients at two healthcare systems (University of Utah Health and New York University Langone Health) through outreach to a randomly selected sample of 2780 eligible patients in the two sites, with 1:1 randomization to the genetic services delivery arms within sites. Study outcomes are assessed through genetics clinic records, EHR, and two follow-up questionnaires at 4 weeks and 12 months after last genetic counseling contactpre-test genetic counseling. Discussion: BRIDGE is being conducted in two healthcare systems with different clinical structures and patient populations. Innovative aspects of the trial include a randomized comparison of a chatbot-based genetic services delivery model to standard of care, as well as identification of at-risk individuals through a sustainable EHR-based system. The findings from the BRIDGE trial will advance the state of the science in identification of unaffected patients with inherited cancer susceptibility and delivery of genetic services to those patients. Trial registration: BRIDGE is registered as NCT03985852. The trial was registered on June 6, 2019 at clinicaltrials.gov.
Development and validation of a brief version of the research engagement survey toolGoodman, M. S., Ackermann, N., Pierce, K. A., Bowen, D. J., & Thompson, V. S. (n.d.).
Journal titleInternational journal of environmental research and public health
Issue19AbstractThe Research Engagement Survey Tool (REST) examines the level of partner engagement in research studies. This study used mixed methods, including web‐based surveys (N = 336), a mod-ified Delphi process (N = 18), and cognitive response interviews (N = 16), with convenience sampling to develop and validate a short version of the REST. We conducted factor analysis and calculated internal consistency for the condensed REST. We validated the condensed REST against the comprehensive REST. All analyses were carried out on two scales (quality and quantity) based on Likert-type response options. We examined convergent validity with other measures theoretically associ-ated with the REST (e.g., the Community Engagement Research Index and the Partnership Self‐ Assessment Tool). This study produced a 9‐item condensed version of the REST. The condensed REST loads on 1 factor, has high internal consistency (Cronbach’s alpha = 0.92 for the quantity scale; 0.94 for the quality scale), is significantly correlated (ρ = 0.97; p < 0.001 for both scales) with the comprehensive (32‐item) REST, and has negligible, low, and moderate correlation with other measures (e.g., the Partnership Assessment In community‐based Research, trust in medical re-searchers, and the Coalition Self‐Assessment Survey). Use of the condensed REST will reduce par-ticipant burden and time to complete. This standardized and validated quantitative measure is useful to compare engagement across projects or within a project over time.
Impact of numeracy preferences on information needs for genome sequencing results
Perceived barriers to assessing understanding and appreciation of informed consent in clinical trials: A mixed-method studySolomon, E. D., Mozersky, J., Baldwin, K., Wroblewski, M. P., Parsons, M. V., Goodman, M., & Dubois, J. M. (n.d.).
Journal titleJournal of Clinical and Translational Science
Issue1AbstractIntroduction: Participants and research professionals often overestimate how well participants understand and appreciate consent information for clinical trials, and experts often vary in their determinations of participant's capacity to consent to research. Past research has developed and validated instruments designed to assess participant understanding and appreciation, but the frequency with which they are utilized is unknown. Methods: We administered a survey to clinical researchers working with older adults or those at risk of cognitive impairment (N = 1284), supplemented by qualitative interviews (N = 60). Results: We found that using a validated assessment of consent is relatively uncommon, being used by only 44% of researchers who had an opportunity. Factors that predicted adoption of validated assessments included not seeing the study sponsor as a barrier, positive attitudes toward assessments, and being confident that they had the resources needed to implement an assessment. The perceived barriers to adopting validated assessments of consent included lack of awareness, lack of knowledge, being unsure of how to administer such an assessment, and the burden associated with implementing this practice. Conclusions: Increasing the use of validated assessments of consent will require educating researchers on the practice and emphasizing very practical assessments, and may require Institutional Review Boards (IRBs) or study sponsors to champion the use of assessments.
Psychometric Validation of a Scale to Assess Culturally-Salient Aspects of HIV Stigma Among Women Living with HIV in Botswana: Engaging “What Matters Most” to Resist StigmaYang, L. H., Ho-Foster, A. R., Becker, T. D., Misra, S., Rampa, S., Poku, O. B., Entaile, P., Goodman, M., & Blank, M. B. (n.d.).
Journal titleAIDS and Behavior
Page(s)459-474AbstractPerceived stigma deters engagement in HIV care and is powerfully shaped by culture. Yet few stigma measures consider how cultural capabilities that signify “full personhood” could be engaged to resist stigma. By applying a theory conceptualizing how culturally-salient mechanisms can worsen or mitigate HIV stigma in relation to “what matters most” (WMM), we developed the WMM Cultural Stigma Scale for Women Living with HIV in Botswana (WMM-WLHIV-BW) and psychometrically evaluated it among 201 respondents with known and unknown HIV status. The two subscales, Cultural Factors Shape Stigma (CFSS) and Cultural Capabilities Protect against Stigma (CCPS) were reliable (both α= 0.90). Among WLHIV, the CFSS Subscale showed initial construct validity with depressive symptoms (r =.39, p =.005), similar to an established HIV stigma scale, whereas the CCPS Subscale showed initial construct validity with self-esteem (r =.32, p =.026) and social support number (r =.29, p =.047), suggesting that achieving local cultural capabilities mitigates stigma and is linked with positive psychosocial outcomes. This culturally-derived scale could help WLHIV in Botswana experience improved stigma-related outcomes.
Strategies of community engagement in research: Definitions and classificationsThompson, V. L., Ackermann, N., Bauer, K. L., Bowen, D. J., & Goodman, M. S. (n.d.).
Journal titleTranslational Behavioral Medicine
Page(s)441-451AbstractEngagement activities are defined along a continuum that analyzes and represents nonacademic stakeholder activities and interactions with academic researchers. Proposed continua begin with none to limited stakeholder inclusion and input into research and continue with descriptions of increasing presence, input, and participation in decision-making. Despite some agreement in the literature, development of consistent terminology and definitions has been recommended to promote the common understanding of strategies in engaged research. This paper sought to develop and understand classifications and definitions of community-engaged research that can serve as the foundation of a measure of engaged research that permits comparisons among engagement strategies and the outcomes that they produce in health-and healthcare-related research studies. Data on academic and stakeholder perceptions and understandings of classifications and definitions were obtained using Delphi process (N = 19) via online and face-to-face survey and cognitive response interviews (N = 16). Participants suggested the need for more nuanced understanding of engagement along portions of the continuum, with active involvement and decision-making as engagement progressed. Cognitive interview responses suggested that outreach and education is a more advanced level of engagement than previously discussed in the literature and viewed consultation negatively because it required work without guaranteeing community benefit. It is possible to define a continuum of patient-and community-engaged research that is understood and accepted by both academic researchers and community members. However, future research should revisit the understanding and depiction of the strategies that are to be used in measure development.
Community partners' responses to items assessing stakeholder engagement: Cognitive response testing in measure developmentThompson, V. L., Leahy, N., Ackermann, N., Bowen, D. J., & Goodman, M. S. (n.d.).
Journal titlePloS one
Issue11AbstractBackground 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. Objective 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. Method 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. Results 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. Conclusion 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.
Mothers moving towards empowerment' intervention to reduce stigma and improve treatment adherence in pregnant women living with HIV in Botswana: Study protocol for a pragmatic clinical trialPoku, O. B., Ho-Foster, A. R., Entaile, P., Misra, S., Mehta, H., Rampa, S., Goodman, M., Arscott-Mills, T., Eschliman, E., Jackson, V., Melese, T., Becker, T. D., Eisenberg, M., Link, B., Go, V., Opondo, P. R., Blank, M. B., & Yang, L. H. (n.d.).
Issue1AbstractBACKGROUND: With high rates of HIV and multiple vulnerable subgroups across diverse settings, there is a need for culturally based, HIV stigma reduction interventions. Pregnant women who are living with HIV are especially in need of services to protect not only their own but also their children's lives. Uptake of HIV services worldwide is hindered by stigma towards persons living with HIV/AIDS. While cultural context plays a key role in shaping HIV stigma, these insights have not yet been fully integrated into stigma reduction strategies. By utilizing the "What Matters Most" stigma framework, we propose that an intervention to counter culturally salient aspects of HIV stigma will improve treatment adherence and other relevant outcomes. A pragmatic clinical trial in Botswana will evaluate the "Mothers Moving towards Empowerment" (MME) intervention, which seeks to address HIV stigma in Botswana and to specifically engage pregnant mothers so as to promote antiretroviral therapy (ART) adherence in the postpartum period.METHODS: This study will test MME against treatment as usual (TAU) among pregnant mothers diagnosed with HIV and their infants. Outcomes will be assessed during pregnancy and 16 weeks postpartum. Women who meet eligibility criteria are assigned to MME or TAU. Women assigned to MME are grouped with others with similar estimated delivery dates, completing up to eight intervention group sessions scheduled before week 36 of their pregnancies. Primary outcomes among mothers include (i) reducing self-stigma, which is hypothesized to mediate improvements in (ii) psychological outcomes (quality of life, depression and social functioning), and (iii) adherence to antenatal care and ART. We will also examine a set of follow-up infant birth outcomes (APGAR score, preterm delivery, mortality (at < 16 weeks), birth weight, vaccination record, and HIV status).DISCUSSION: Our trial will evaluate MME, a culturally based HIV stigma reduction intervention using the "What Matters Most" framework, to reduce stigma and improve treatment adherence among pregnant women and their infants. This study will help inform further refinement of MME and preparation for a future large-scale, multisite, randomized controlled trial (RCT) in Botswana.TRIAL REGISTRATION: ClinicalTrials.gov NCT03698981 . Registered on October 8, 2018.
Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for BiobanksHong, S. J., Drake, B., Goodman, M., & Kaphingst, K. A. (n.d.).
Journal titleHealth Communication
Page(s)1219-1228AbstractThis study investigates how patients’ privacy concerns about research uses of biospecimen and trust in doctors are associated with their preferences for informed consent and need for control over biospecimens in a biobank. Particularly, this study focuses on the perspectives of Communication Privacy Management theory, precision medicine, and racial health disparities. We recruited 358 women aged 40 and older stratified by race (56% African American and 44% European American). Multivariable linear regression models examined hypothesis and research questions. Individuals’ privacy concerns and trust in doctors were significantly associated with their need for control. Although participants’ privacy concerns were positively associated with their preference for study-specific model, trust in doctors had no effect on the preference. African American participants needed more control over their sample and were more likely to prefer study-specific model compared to European American participants. Significant interactions by race on the associations between trust and need for control and between privacy concerns and preference for study-specific model were found. These findings suggest that when developing large diverse biobanks for future studies it is important to consider privacy concerns, trust, and need for control with an understanding that there are differences in preferences by race.
Racial Discrimination, Sexual Partner Race/Ethnicity, and Depressive Symptoms Among Black Sexual Minority MenEnglish, D., Hickson, D. M. A., Callander, D., Goodman, M. S., & Duncan, D. T. (n.d.).
Journal titleArchives of Sexual Behavior
Page(s)1799-1809AbstractAlthough racial sexual exclusivity among Black gay, bisexual, and other sexual minority men (SMM) is frequently framed as a cause of HIV inequities, little research has examined how these sexual relationships may be driven by and protective against racism. This study examined associations between general racial discrimination, Black sexual exclusivity, sexual racial discrimination, and depressive symptoms among Black SMM. We conducted analyses on cross-sectional self-report data from 312 cisgender Black SMM in the U.S. Deep South who participated in the MARI study. Measures included general racial and sexual identity discrimination, race/ethnicity of sexual partners, sexual racial discrimination, and depressive symptoms. We estimated a moderated-mediation model with associations from discrimination to Black sexual exclusivity, moderated by discrimination target, from Black sexual exclusivity to sexual racial discrimination, and from sexual racial discrimination to depressive symptoms. We tested an indirect effect from racial discrimination to depressive symptoms to examine whether Black sexual exclusivity functioned as an intervening variable in the associations between racial discrimination and depressive symptoms. Results indicated that participants who experienced racial discrimination were more likely to exclusively have sex with Black men. Men with higher Black sexual exclusivity were less likely to experience sexual racial discrimination and, in turn, reported lower depressive symptoms. The indirect pathway from racial discrimination to depressive symptoms through Black sexual exclusivity and sexual racial discrimination was significant. Our results suggest that one of the drivers of sexual exclusivity among Black SMM may be that it helps to protect against the caustic psychological effects of racial discrimination.
Racial/Ethnic Diversity in Academic Public Health: 20-Year Update
Reaching consensus on principles of stakeholder engagement in researchFailed generating bibliography.Abstract
Journal titleProgress in Community Health Partnerships: Research, Education, and Action
Page(s)117-127AbstractBackground: Stakeholder-engaged research is an umbrella term for the types of research that have community, patient, and/or stakeholder engagement, feedback, and bidirectional communication as approaches used in the research process. The level of stakeholder engagement across studies can vary greatly, from minimal engagement to fully collaborative partnerships. Objectives: To present the process of reaching consensus among stakeholder and academic experts on the stakeholder engagement principles (EPs) and to identify definitions for each principle. Methods: We convened 19 national experts, 18 of whom remained engaged in a five-round Delphi process. The Delphi panel consisted of a broad range of stakeholders (e.g., patients, caregivers, advocacy groups, clinicians, researchers). We used web-based surveys for most rounds (1–3 and 5) and an in-person meeting for round 4. Panelists evaluated EP titles and definitions with a goal of reaching consensus (>80% agreement). Panelists’ comments guided modifications, with greater weight given to non-academic stakeholder input. Conclusions: EP titles and definitions were modified over five Delphi rounds. The panel reached consensus on eight EPs (dropping four, modifying four, and adding one) and corresponding definitions. The Delphi process allowed for a stakeholder-engaged approach to methodological research. Stakeholder engagement in research is time consuming and requires greater effort but may yield a better, more relevant outcome than more traditional scientist-only processes. This stakeholder-engaged process of reaching consensus on EPs and definitions provides a key initial step for the content validation of a survey tool to examine the level of stakeholder engagement in research studies.