Melody Goodman
Melody Goodman
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Interim Dean, School of Global Public Health
Professor of Biostatistics
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Professional overview
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Dr. Melody S. Goodman is a biostatistician and research methodologist. Her research interest is identifying the origins of health inequities and developing, as necessary, evidence-informed primary prevention strategies to reduce these health inequities. Dr. Goodman’s research efforts seek to develop a more rigorous understanding of the social risk factors contributing to urban health inequities to develop culturally competent, region-specific solutions through collaborative activities with community members, community-based organizations, faith-based organizations, and other community health stakeholders. Her work aims to develop solutions for improving health in minoritized and medically underserved communities.
Dr. Goodman led the team that developed and comprehensively evaluated the Research Engagement Survey Tool, a quantitative survey measure to assess the level of community engagement in research studies from the community partner perspective. She is the Founding Director of the Center for Antiracism, Social Justice, & Public Health. With numerous funders supporting her work (e.g., National Institutes of Health, Robert Wood Johnson Foundation, Verizon Foundation, Long Island Community Foundation, Patient-Centered Outcomes Research Institute, and Susan G. Komen), she has published over 100 peer-reviewed journal articles and two books (2018 Routledge/Taylor & Francis Group): 1) Public Health Research Methods for Partnerships and Practice and 2) Biostatistics for Clinical and Public Health Research. She is a Fellow of the American Statistical Association and the inaugural recipient of the Societal Impact Award from the Caucus for Women in Statistics (2021).
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Education
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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
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Honors and awards
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Fellow, American Statistical Association (2021)Societal Impact Award, Caucus for Women in Statistics (2021)Network Builder Award, Robert Wood Johnson Foundation New Connections (2019)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)
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Areas of research and study
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BiostatisticsCommunity HealthCommunity-based Participatory ResearchDissemination and Implementation of Evidence-based ProgramsHealth DisparitiesHealth EquityMinoritiesMinority HealthQuantitative Research
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Publications
Publications
Acculturation and Depressive Symptoms Among Dominicans in New York City
AbstractHagen, D., Goldmann, E., Parikh, N. S., Goodman, M., & Boden-Albala, B. (n.d.).Publication year
2022Journal title
Journal of Immigrant and Minority HealthVolume
24Issue
5Page(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.Association of Disparities in Family History and Family Cancer History in the Electronic Health Record with Sex, Race, Hispanic or Latino Ethnicity, and Language Preference in 2 Large US Health Care Systems
AbstractChavez-Yenter, D., Goodman, M. S., Chen, Y., Chu, X., Bradshaw, R. L., Lorenz Chambers, R., Chan, P. A., Daly, B. M., Flynn, M., Gammon, A., Hess, R., Kessler, C., Kohlmann, W. K., Mann, D. M., Monahan, R., Peel, S., Kawamoto, K., Del Fiol, G., Sigireddi, M., … Kaphingst, K. A. (n.d.).Publication year
2022Journal title
JAMA network openPage(s)
E2234574AbstractImportance: Clinical decision support (CDS) algorithms are increasingly being implemented in health care systems to identify patients for specialty care. However, systematic differences in missingness of electronic health record (EHR) data may lead to disparities in identification by CDS algorithms. Objective: To examine the availability and comprehensiveness of cancer family history information (FHI) in patients' EHRs by sex, race, Hispanic or Latino ethnicity, and language preference in 2 large health care systems in 2021. Design, Setting, and Participants: This retrospective EHR quality improvement study used EHR data from 2 health care systems: University of Utah Health (UHealth) and NYU Langone Health (NYULH). Participants included patients aged 25 to 60 years who had a primary care appointment in the previous 3 years. Data were collected or abstracted from the EHR from December 10, 2020, to October 31, 2021, and analyzed from June 15 to October 31, 2021. Exposures: Prior collection of cancer FHI in primary care settings. Main Outcomes and Measures: Availability was defined as having any FHI and any cancer FHI in the EHR and was examined at the patient level. Comprehensiveness was defined as whether a cancer family history observation in the EHR specified the type of cancer diagnosed in a family member, the relationship of the family member to the patient, and the age at onset for the family member and was examined at the observation level. Results: Among 144484 patients in the UHealth system, 53.6% were women; 74.4% were non-Hispanic or non-Latino and 67.6% were White; and 83.0% had an English language preference. Among 377621 patients in the NYULH system, 55.3% were women; 63.2% were non-Hispanic or non-Latino, and 55.3% were White; and 89.9% had an English language preference. Patients from historically medically undeserved groups - specifically, Black vs White patients (UHealth: 17.3% [95% CI, 16.1%-18.6%] vs 42.8% [95% CI, 42.5%-43.1%]; NYULH: 24.4% [95% CI, 24.0%-24.8%] vs 33.8% [95% CI, 33.6%-34.0%]), Hispanic or Latino vs non-Hispanic or non-Latino patients (UHealth: 27.2% [95% CI, 26.5%-27.8%] vs 40.2% [95% CI, 39.9%-40.5%]; NYULH: 24.4% [95% CI, 24.1%-24.7%] vs 31.6% [95% CI, 31.4%-31.8%]), Spanish-speaking vs English-speaking patients (UHealth: 18.4% [95% CI, 17.2%-19.1%] vs 40.0% [95% CI, 39.7%-40.3%]; NYULH: 15.1% [95% CI, 14.6%-15.6%] vs 31.1% [95% CI, 30.9%-31.2%), and men vs women (UHealth: 30.8% [95% CI, 30.4%-31.2%] vs 43.0% [95% CI, 42.6%-43.3%]; NYULH: 23.1% [95% CI, 22.9%-23.3%] vs 34.9% [95% CI, 34.7%-35.1%]) - had significantly lower availability and comprehensiveness of cancer FHI (P <.001). Conclusions and Relevance: These findings suggest that systematic differences in the availability and comprehensiveness of FHI in the EHR may introduce informative presence bias as inputs to CDS algorithms. The observed differences may also exacerbate disparities for medically underserved groups. System-, clinician-, and patient-level efforts are needed to improve the collection of FHI..Barriers to family history collection among Spanish-speaking primary care patients: a BRIDGE qualitative study
AbstractLiebermann, E., Taber, P., Vega, A. S., Daly, B. M., Goodman, M. S., Bradshaw, R., Chan, P. A., Chavez-Yenter, D., Hess, R., Kessler, C., Kohlmann, W., Low, S., Monahan, R., Kawamoto, K., Del Fiol, G., Buys, S. S., Sigireddi, M., Ginsburg, O., & Kaphingst, K. A. (n.d.).Publication year
2022Journal title
PEC InnovationVolume
1AbstractObjectives: Family history is an important tool for assessing disease risk, and tailoring recommendations for screening and genetic services referral. This study explored barriers to family history collection with Spanish-speaking patients. Methods: This qualitative study was conducted in two US healthcare systems. We conducted semi-structured interviews with medical assistants, physicians, and interpreters with experience collecting family history for Spanish-speaking patients. Results: The most common patient-level barrier was the perception that some Spanish-speaking patients had limited knowledge of family history. Interpersonal communication barriers related to dialectical differences and decisions about using formal interpreters vs. Spanish-speaking staff. Organizational barriers included time pressures related to using interpreters, and ad hoc workflow adaptations for Spanish-speaking patients that might leave gaps in family history collection. Conclusions: This study identified multi-level barriers to family history collection with Spanish-speaking patients in primary care. Findings suggest that a key priority to enhance communication would be to standardize processes for working with interpreters. Innovation: To improve communication with and care provided to Spanish-speaking patients, there is a need to increase healthcare provider awareness about implicit bias, to address ad hoc workflow adjustments within practice settings, to evaluate the need for professional interpreter services, and to improve digital tools to facilitate family history collection.Construct validation of the Research Engagement Survey Tool (REST)
AbstractGoodman, M. S., Ackermann, N., Haskell-Craig, Z., Jackson, S., Bowen, D. J., & Sanders Thompson, V. L. (n.d.).Publication year
2022Journal title
Research Involvement and EngagementVolume
8Issue
1AbstractBackground: 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 States
AbstractOmpad, D. C., Snyder, K. M., Sandh, S., Hagen, D., Collier, K. J., Goldmann, E., Goodman, M. S., & Tan, A. S. (n.d.).Publication year
2022Journal title
Drug and alcohol dependenceVolume
235AbstractBackground: 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.Editorial: An insight into university medical and health science courses
Kang, S., Goodman, M. S., Thakur, H. P., Grivna, M., & Zodpey, S. P. (n.d.).Publication year
2022Journal title
Frontiers in Public HealthVolume
10Editorial: Women in science: Public health education and promotion 2021
Caron, R. M., Jamshed, S. Q., Goodman, M. S., & Kang, S. (n.d.).Publication year
2022Journal title
Frontiers in Public HealthVolume
10GARDE: A standards-based clinical decision support platform for identifying population health management cohorts
AbstractBradshaw, 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., … Del Fiol, G. (n.d.).Publication year
2022Journal title
Journal of the American Medical Informatics AssociationVolume
29Issue
5Page(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 donors
AbstractNestor, 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.).Publication year
2022Journal title
Clinical TransplantationVolume
36Issue
1AbstractIt 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 Packaging
AbstractTan, A. S., Weinreich, E., Padon, A., Sanchez, M., Snyder, K. M., Vasilyeva, A., Sandh, S., Goldmann, E., Goodman, M., & Ompad, D. C. (n.d.).Publication year
2022Journal title
Substance Use and MisuseVolume
57Issue
8Page(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 literature
AbstractSisk, B. A., Keenan, M., Goodman, M. S., Servin, A. E., Yaeger, L. H., Mack, J. W., & DuBois, J. M. (n.d.).Publication year
2022Journal title
Patient Education and CounselingVolume
105Issue
7Page(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 Disparities in Breast Reconstruction at a Comprehensive Cancer Center
AbstractConnors, S. K., Goodman, M. S., Myckatyn, T., Margenthaler, J., & Gehlert, S. (n.d.).Publication year
2022Journal title
Journal of Racial and Ethnic Health DisparitiesVolume
9Issue
6Page(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.Rapid Community Engagement in Response to SARS-CoV-2 Funding Opportunities: New York City, 2020–2021
AbstractWilliams, N. J., Gill, E., Punter, M. A., Reiss, J., Goodman, M., Shelley, D., & Thorpe, L. E. (n.d.).Publication year
2022Journal title
American journal of public healthVolume
112Page(s)
S904-S908AbstractIn response to fast-turnaround funding opportunities, collaborations have been forming across the country to address severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) disparities. Here we describe the process, notes from the field, and evaluation results from a new collaboration involving multiple partners, formed in October 2020 in New York City as part of the Rapid Acceleration of Diagnostics initiative. We used the validated Research Engagement Survey Tool to evaluate the partnership. Results can inform future research and improve engagement efforts aimed at reducing SARS-CoV-2 disparities.Understanding the Use of Optimal Formatting and Plain Language When Presenting Key Information in Clinical Trials
AbstractSolomon, E. D., Mozersky, J., Wroblewski, M. P., Baldwin, K., Parsons, M. V., Goodman, M., & DuBois, J. M. (n.d.).Publication year
2022Journal title
Journal of Empirical Research on Human Research EthicsVolume
17Issue
1Page(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 researchers
AbstractMozersky, J., McIntosh, T., Walsh, H. A., Parsons, M. V., Goodman, M., & DuBois, J. M. (n.d.).Publication year
2021Journal title
PloS oneVolume
16Issue
12AbstractQualitative 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 trial
Failed generating bibliography.AbstractPublication year
2021Journal title
BMC health services researchVolume
21Issue
1AbstractBackground: 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 tool
AbstractGoodman, M. S., Ackermann, N., Pierce, K. A., Bowen, D. J., & Thompson, V. S. (n.d.).Publication year
2021Journal title
International journal of environmental research and public healthVolume
18Issue
19AbstractThe 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
AbstractAlbrechtsen, R. D., Goodman, M. S., Bather, J. R., & Kaphingst, K. A. (n.d.).Publication year
2021Journal title
Patient Education and CounselingVolume
104Issue
3Page(s)
467-472AbstractObjective: This study investigated how self-reported numeracy ability and preferences predict preferences for the amount and types of information provided about genome sequencing results among 1080 women diagnosed with breast cancer at age 40 or younger. Methods: Participants reported their level of interest in 14 topics related to genome sequencing results on a survey. We calculated a Participant Information Needs (PIN) value based on the number of topics for which a participant wanted “a lot” of information. Numeracy was assessed using the Subjective Numeracy Scale. Analyses examined associations between the numeracy ability and preferences subscales, information needs for individual content topics, and PIN. Results: Higher preference for numeric data was correlated with increased PIN (β = 0.60, p < 0.01), while numeric ability was not correlated (β=0.16, p = 0.22). Family composition and knowledge about sequencing benefits were also significant covariates. Patients most preferred information on topics related to disease risk and health implications. Conclusion: There may be utility in separating numeracy ability and preferences into two components in future research in order to investigate how numeracy impacts the return of genetic testing results. Practice Implications: These data suggest that numeracy preferences may be important to inform strategies for the return of genetic results.Perceived barriers to assessing understanding and appreciation of informed consent in clinical trials: A mixed-method study
AbstractSolomon, E. D., Mozersky, J., Baldwin, K., Wroblewski, M. P., Parsons, M. V., Goodman, M., & Dubois, J. M. (n.d.).Publication year
2021Journal title
Journal of Clinical and Translational ScienceVolume
5Issue
1AbstractIntroduction: 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 Stigma
AbstractYang, 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.).Publication year
2021Journal title
AIDS and BehaviorVolume
25Issue
2Page(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 classifications
AbstractThompson, V. L., Ackermann, N., Bauer, K. L., Bowen, D. J., & Goodman, M. S. (n.d.).Publication year
2021Journal title
Translational Behavioral MedicineVolume
11Issue
2Page(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 development
AbstractThompson, V. L., Leahy, N., Ackermann, N., Bowen, D. J., & Goodman, M. S. (n.d.).Publication year
2020Journal title
PloS oneVolume
15Issue
11AbstractBackground 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 trial
AbstractPoku, 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.).Publication year
2020Journal title
TrialsVolume
21Issue
1AbstractBACKGROUND: 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 Biobanks
AbstractHong, S. J., Drake, B., Goodman, M., & Kaphingst, K. A. (n.d.).Publication year
2020Journal title
Health CommunicationVolume
35Issue
10Page(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 Men
AbstractEnglish, D., Hickson, D. M. A., Callander, D., Goodman, M. S., & Duncan, D. T. (n.d.).Publication year
2020Journal title
Archives of Sexual BehaviorVolume
49Issue
5Page(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.