Vice 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
Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic reviewIltis, A. S., Rolf, L., Yaeger, L., Goodman, M. S., & DuBois, J. M. (n.d.).
Journal titleJournal of Genetic Counseling
Page(s)435-461AbstractGeographical ancestry has been associated with an increased risk of various genetic conditions. Race and ethnicity often have been used as proxies for geographical ancestry. Despite numerous problems associated with the crude reliance on race and ethnicity as proxies for geographical ancestry, some genetic testing in the clinical, research, and employment settings has been and continues to be race- or ethnicity-based. Race-based or race-targeted genetic testing refers to genetic testing offered only or primarily to people of particular racial or ethnic groups because of presumed differences among groups. One current example is APOL1 testing of Black kidney donors. Race-based genetic testing raises numerous ethical and policy questions. Given the ongoing reliance on the Black race in genetic testing, it is important to understand the views of people who identify as Black or are identified as Black (including African American, Afro-Caribbean, and Hispanic Black) regarding race-based genetic testing that targets Black people because of their race. We conducted a systematic review of studies and reports of stakeholder-engaged projects that examined how people who identify as or are identified as Black perceive genetic testing that specifically presumes genetic differences exist among racial groups or uses race as a surrogate for ancestral genetic variation and targets Black people. Our review identified 14 studies that explicitly studied this question and another 13 that implicitly or tacitly studied this matter. We found four main factors that contribute to a positive attitude toward race-targeted genetic testing (facilitators) and eight main factors that are associated with concerns regarding race-targeted genetic testing (barriers). This review fills an important gap. These findings should inform future genetic research and the policies and practices developed in clinical, research, public health, or other settings regarding genetic testing.
Barriers to Using Legally Authorized Representatives in Clinical Research with Older AdultsMozersky, J., Solomon, E. D., Baldwin, K., Wroblewski, M., Parsons, M., Goodman, M., & Dubois, J. M. (n.d.).
Journal titleJournal of Alzheimer's Disease Reports
Page(s)135-149AbstractBackground: Older adults are at increased risk of cognitive impairments including Alzheimer's disease dementia. Legally authorized representatives (LARs) can provide informed consent when a participant is no longer able to, but little is known about barriers to incorporating them in research. Objective: Explore reasons for not asking and documenting participant decisions to appoint LARs among researchers conducting clinical intervention trials studying older adults or individuals with cognitive impairments. Methods: Mixed method design consisting of a survey (N = 1,284) and qualitative interviews (N = 40) regarding barriers to incorporating LARs. Participants were principal investigators and clinical research coordinators. Results: 37% (N = 469) had not asked and documented participant decisions about appointing LARs in the prior year. They had significantly lower confidence in resources available to incorporate LARs and lower positive attitudes compared to their counterparts who had done so. The majority (83%) had no trials studying individuals with cognitive impairments and reported LARs were not applicable. A minority (17%) had at least one trial studying individuals with cognitive impairments and reported being unaware of LARs. Qualitative findings indicate discomfort broaching a sensitive topic especially with individuals who are not yet impaired. Conclusion: Resources and education to increase awareness and knowledge of LARs are needed. Researchers studying older adults should, at minimum, have the knowledge and resources to incorporate LARs when necessary. Stigma and discomfort discussing LARs will need to be overcome, as early proactive discussions before a participant loses decisional capacity could enhance participant autonomy and facilitate recruitment and retention of older adults to research.
Distal Factors Associated With Proximal Overdose Risk Behaviors and Recent Non-Fatal Overdose Among a Sample of People Who Use Illicit Opioids in New York CityElliott, L., Chen, Y., Goodman, M., & Bennett, A. S. (n.d.).
Journal titleJournal of Drug IssuesAbstractThis analysis identifies factors associated with overdose risk behaviors and non-fatal overdose among a sample of 577 adult-age people who use illicit opioids and live in NYC. Survey data--which included outcome measures assessing (1) past 30-day non-fatal overdose and past 30-day overdose-related risk behaviors and (2) predictors representing potential risk and protective factors—were analyzed using bivariate and Poisson regression techniques. Results indicate being 41–56 years in age, being widowed, using cannabis, injecting, and having greater pain severity and mental health challenges were associated with greater risks. Current employment, homelessness, and prescription of medications for opioid use disorder were associated with fewer risks. Being 57+ was negatively associated with past-month overdose; higher pain severity and opioid related withdrawal were positively related, as were employment, cannabis use, and injection. Findings suggest the importance of expanding access to MOUD and tailoring OD prevention interventions for mental health and pain management services.
Investigation of interest in and timing preference for cancer predisposition testing and expanded carrier screening among women of reproductive ageZhong, L., Bather, J. R., Daly, B. M., Kohlmann, W. K., Goodman, M. S., Rothwell, E., & Kaphingst, K. A. (n.d.).
Journal titlePEC Innovation
Volume2AbstractObjective: To examine cognitive, relational, and social predictors of interest in and timing preference for cancer predisposition testing (CPT) and expanded carrier screening (ECS) offered in routine gynecologic care for women of reproductive age. Methods: Women between 20 and 35 years old who were currently pregnant or had a prior pregnancy (N = 351) completed an online survey. Bivariate and multivariable analyses were used to identify significant predictors of women's interest in and timing preference for CPT and ECS. Results: Most respondents reported high interest in CPT and ECS and preferred to have them when planning for a pregnancy. Perceived importance of genetic information and negative attitude towards uncertainty predicted interest in CPT and ECS in multivariable models. Genetic knowledge predicted preference for CPT or ECS when planning for a pregnancy. Conclusion: Educational and decision support tools should be developed to enhance women's knowledge and awareness of CPT and ECS and to provide them with strategies to manage uncertainty. Innovation: We examined women's timing preference for CPT and ECS and the impact of partner support and trust with gynecologist. A context-specific attitudes toward uncertainty scale was used to investigate women's particular perceptions of uncertainty in genetic testing.
Predictors of Women's Intentions to Communicate Updated Genetic Test Results to Immediate and Extended Family MembersWinskill, C., Goodman, M. S., Daly, B. M., Elrick, A., Mooney, R., Espinel, W., Kohlmann, W., & Kaphingst, K. A. (n.d.).
Journal titlePublic Health Genomics
Page(s)24-34AbstractIntroduction: Many individuals who previously received negative genetic test results are eligible for updated testing. This study examined intention to communicate updated genetic test results to relatives in participants who previously received negative genetic test results. Methods: Women with a personal or family history of breast or ovarian cancer who tested negative for BRCA1/2 before 2013 were enrolled between April 2018 and October 2019. Proportions were calculated to assess intention to communicate updated genetic test results to living immediate family, extended family, and all family. Potential predictors of intentions from the theory of planned behavior (attitudes, subjective norms, perceived behavioral control) were assessed. The three outcomes were analyzed using generalized linear models with a quasi-binomial probability distribution. Results: 110 women completed the baseline assessment prior to updated testing. Participants intended to communicate genetic test results to 90% of immediate family, 51% of extended family, and 66% of all living relatives. Participants with higher subjective norms (aOR = 1.93, 95% CI: 1.08-3.57) had higher intentions to communicate genetic test results to extended family, while participants with more positive attitudes (aOR = 1.27, 95% CI: 1.01-1.60) had higher intentions to communicate to all family. Placing higher importance on genetic information was associated with higher intentions to communicate to immediate family (aOR = 1.40, 95% CI: 1.06-1.83). Lower subjective numeracy was associated with higher intentions to communicate to extended family (aOR = 0.50, 95% CI: 0.32-0.76). Conclusion: Attitudes and subjective norms were predictors of intention to communicate updated genetic information to at-risk biological relatives, and predictors may vary by degree of relationship.
Promoting Authentic Academic—Community Engagement to Advance Health EquityHudson, D., Gilbert, K., & Goodman, M. (n.d.).
Journal titleInternational journal of environmental research and public health
Issue4AbstractMeaningful community engagement is critical to achieving the lofty goal of health equity. Nonetheless, implementing the principles of community engagement is not easy. Attempting to implement best practices for collaborating on transdisciplinary teams and working with community partners can be challenging, particularly in locales that have a long history of strained university–community relationships. The purpose of this paper is to provide additional context and consideration for researchers, community partners, and institutions interested in conducting community-engaged research. Here, we provide guidance and highlight exemplary programs that offer effective approaches to enhance the strength of community partnerships. These partnerships not only hold promise but are also essential in the development of the local, multi-factor solutions required to address racial/ethnic inequities in health.
Racial and Ethnic Composition of Students, Graduates, and Faculty in Environmental Health Sciences, 2011 to 2021Bather, J. R., Burke, E. M., Plepys, C. M., & Goodman, M. S. (n.d.).
Journal titleEnvironmental Health Insights
Volume17AbstractThe lack of diversity among the environmental health sciences (EHS) workforce has been an ongoing concern. However, limited research exists on the racial and ethnic composition of EHS students and faculty over time. We analyzed 2011 and 2021 data on EHS students, graduates, and faculty to compare changes in the racial and ethnic composition among Association of Schools and Programs of Public Health-member institutions. Among the institutions that reported data in both years, we observed significant proportion increases among Hispanic enrolled students (overall and master’s: both P =.01), Multiracial enrolled students and graduates (overall: both P <.05, master’s level: both P <.05), and Asian tenured professors (P =.01). Significant decreases were observed among Unknown enrolled students (overall: P =.01, master’s level: P <.001), Unknown master’s level graduates (P =.01), AI/AN enrolled students (overall and master’s: both P <.05), and White full professors (P <.001) and tenured faculty (P <.001). Despite these findings, no substantial change existed among the other racial and ethnic groups. More efforts are needed to recruit, train, and promote racial and ethnic minorities who can leverage their lived experiences to provide novel solutions to environmental challenges.
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 Reports
Page(s)546-554AbstractObjective: 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.
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., … 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 randomized implementation trial to increase adoption of evidence-informed consent practicesSolomon, E. D., Mozersky, J., Goodman, M., Parsons, M. V., Baldwin, K., Friedrich, A. B., Harris, J. K., & DuBois, J. M. (n.d.).
Journal titleJournal of Clinical and Translational ScienceAbstractIntroduction: Several evidence-informed consent practices (ECPs) have been shown to improve informed consent in clinical trials but are not routinely used. These include optimizing consent formatting, using plain language, using validated instruments to assess understanding, and involving legally authorized representatives when appropriate. We hypothesized that participants receiving an implementation science toolkit and a social media push would have increased adoption of ECPs and other outcomes. Methods: We conducted a one-year trial with clinical research professionals in the US (N=1284) who have trials open to older adults or focus on Alzheimer's disease. We randomized participants to receive information on ECPs via receiving a toolkit with a social media push (intervention) or receiving an online learning module (active control). Participants completed a baseline survey and a follow-up survey after one year. A subset of participants were interviewed (n=43). Results: Participants who engaged more with the toolkit were more likely to have tried to implement an ECP during the trial than participants less engaged with the toolkit or the active control group. However, there were no significant differences on adoption of ECPs, intention to adopt, or positive attitudes. Participants reported the toolkit and social media push were satisfactory, and participating increased their awareness of ECPs. However, they reported lacking the time needed to engage with the toolkit more fully. Conclusions: Using an implementation science approach to increase the use of ECPs was only modestly successful. Data suggest that having IRBs recommend or require ECPs may be an effective way to increase their use.
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.
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 SystemsChavez-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.).
Journal titleJAMA network open
Page(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 studyLiebermann, 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.).
Journal titlePEC Innovation
Volume1AbstractObjectives: 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)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.
Editorial: An insight into university medical and health science coursesKang, S., Goodman, M. S., Thakur, H. P., Grivna, M., & Zodpey, S. P. (n.d.).
Journal titleFrontiers in Public Health
Editorial: Women in science: Public health education and promotion 2021Caron, R. M., Jamshed, S. Q., Goodman, M. S., & Kang, S. (n.d.).
Journal titleFrontiers in Public Health
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., … 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 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.
Rapid Community Engagement in Response to SARS-CoV-2 Funding Opportunities: New York City, 2020–2021Williams, N. J., Gill, E., Punter, M. A., Reiss, J., Goodman, M., Shelley, D., & Thorpe, L. E. (n.d.).
Journal titleAmerican journal of public health
Page(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 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.