Melody Goodman

Goodman, Melody

Melody Goodman

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Interim Dean, School of Global Public Health

Professor of Biostatistics

Professional overview

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).

Education

BS, Economics and Applied Mathematics & Statistics, State University of New York at Stony Brook, Stony Brook, NY
MS, Biostatistics, Harvard University, Cambridge, MA
PhD, Biostatistics (Minors: Social Determinants of Health Disparities and Theoretical Statistics), Harvard University, Cambridge, MA

Honors and awards

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)

Areas of research and study

Biostatistics
Community Health
Community-based Participatory Research
Dissemination and Implementation of Evidence-based Programs
Health Disparities
Health Equity
Minorities
Minority Health
Quantitative Research

Publications

Publications

For the Sake of All: Civic Education on the Social Determinants of Health and Health Disparities in St. Louis

Purnell, J. Q., Goodman, M., Tate, W. F., Harris, K. M., Hudson, D. L., Jones, B. D., Fields, R., Camberos, G., Elder, K., Drake, B., & Gilbert, K. (n.d.).

Publication year

2018

Journal title

Urban Education

Volume

53

Issue

6

Page(s)

711-743
Abstract
Abstract
Civic education translates research evidence about topics of social importance for broad public audiences, with increased understanding and meaningful action of the desired outcomes. For the Sake of All is an example of civic education on the social determinants of health and health disparities situated in the local context of St. Louis, Missouri. This article describes the research translation, community engagement, strategic communication, and approach to policy that characterized this project. It presents data highlighting racial disparities in health, educational, and economic outcomes, along with policy and programmatic recommendations. Engagement and implementation strategies are described within the context of the events in Ferguson.

How segregation makes Us Fat: Food behaviors and food environment as mediators of the relationship between residential segregation and individual body mass index

Goodman, M., Lyons, S., Dean, L. T., Arroyo, C., & Hipp, J. A. (n.d.).

Publication year

2018

Journal title

Frontiers in Public Health

Volume

6
Abstract
Abstract
Objectives: Racial residential segregation affects food landscapes that dictate residents' food environments and is associated with obesity risk factors, including individual dietary patterns and behaviors. We examine if food behaviors and environments mediate the association between segregation and body mass index (BMI). Methods: Non-Hispanic Whites and Blacks living in the St. Louis and Kansas City metro regions from 2012 to 2013 were surveyed on dietary behaviors, food environment, and BMI (n = 1,412). These data were combined with the CDC's modified retail food environment index and 2012 American Community Survey data to calculate racial segregation using various evenness and exposure indices. Multi-level mediation analyses were conducted to determine if dietary behavior and food environment mediate the association between racial residential segregation and individual BMI. Results: The positive association between racial segregation and individual BMI is partially mediated by dietary behaviors and fully mediated by food environments. Conclusion: Racial segregation (evenness and exposure) is associated with BMI, mediated by dietary behaviors and food environment. Elements of the food environment, which form the context for dietary behaviors, are potential targets for interventions to reduce obesity in residentially segregated areas.

Photovoice as a Pedagogical Tool to Increase Research Literacy Among Community Members

Komaie, G., Gilbert, K. L., Arroyo, C., & Goodman, M. S. (n.d.).

Publication year

2018

Journal title

Pedagogy in Health Promotion

Volume

4

Issue

2

Page(s)

108-114
Abstract
Abstract
Photovoice is a community-based participatory research method that engages individuals to use photographs to reflect on the strengths and issues affecting their community as well as advocate for positive change. This article presents using photovoice as a pedagogical tool to introduce qualitative research methods to community members enrolled in the 15-week Community Research Fellows Training Program in Saint Louis, Missouri. Seventy-eight community members across two cohorts completed individual homework assignments examining social capital and health. Completed assignments were categorized into six general themes and participants took part in facilitated small group discussions by theme. Pre- and posttest surveys were completed; statistically significant improvements were seen in participants’ knowledge of qualitative methods. On a scale of 1 to 5, participants rated the qualitative methods session positively with an overall score of 4.48 (Cohort I) and 4.80 (Cohort II). Qualitative data from session evaluations and exit interviews illustrate completing a photovoice project served as a “powerful” and “insightful” experience that enhanced experiential learning and engaged participants in health-related research in their communities. Participants’ positive session evaluations and increased knowledge of qualitative methods suggest that photovoice is an effective pedagogical tool to increase research literacy among community members. Opportunities to broadly train community members, especially those that are not part of a single community-based organization, may help build broader community capacity and as such strengthen community–academic partnerships.

Preferences for learning different types of genome sequencing results among young breast cancer patients: Role of psychological and clinical factors

Kaphingst, K. A., Ivanovich, J., Lyons, S., Biesecker, B., Dresser, R., Elrick, A., Matsen, C., & Goodman, M. (n.d.).

Publication year

2018

Journal title

Translational Behavioral Medicine

Volume

8

Issue

1

Page(s)

71-79
Abstract
Abstract
The growing importance of genome sequencing means that patients will increasingly face decisions regarding what results they would like to learn. The present study examined psychological and clinical factors that might affect these preferences. 1,080 women diagnosed with breast cancer at age 40 or younger completed an online survey. We assessed their interest in learning various types of genome sequencing results: risk of preventable disease or unpreventable disease, cancer treatment response, uncertain meaning, risk to relatives' health, and ancestry/physical traits. Multivariable logistic regression was used to examine whether being "very" interested in each result type was associated with clinical factors: BRCA1/2 mutation status, prior genetic testing, family history of breast cancer, and psychological factors: cancer recurrence worry, genetic risk worry, future orientation, health information orientation, and genome sequencing knowledge. The proportion of respondents who were very interested in learning each type of result ranged from 16% to 77%. In all multivariable models, those who were very interested in learning a result type had significantly higher knowledge about sequencing benefits, greater genetic risks worry, and stronger health information orientation compared to those with less interest (p-values <.05). Our findings indicate that high interest in return of various types of genome sequencing results was more closely related to psychological factors. Shared decision-making approaches that increase knowledge about genome sequencing and incorporate patient preferences for health information and learning about genetic risks may help support patients' informed choices about learning different types of sequencing results.

Training Community Members in Public Health Research: Development and Implementation of a Community Participatory Research Pilot Project

Komaie, G., Goodman, M., McCall, A., McGill, G., Patterson, C., Hayes, C., & Sanders Thompson, V. (n.d.).

Publication year

2018

Journal title

Health Equity

Volume

2

Issue

1

Page(s)

282-287
Abstract
Abstract
Purpose: Community-based training in public health research can build capacity for community-based participatory research (CBPR) and foster health partnerships between academics and stakeholders. We describe a community-academic partnership developed from a 15-week program, the Community Research Fellows Training (CRFT), designed to increase research literacy and facilitate equitable relationships in community/researcher collaborations and partnerships. The article provides a description of a community and faculty collaboration to conduct a participatory pilot research project that followed program completion. Methods: Four CRFT program alumni formed a community research team and selected a faculty mentor. After a request for proposal release, the team developed a pilot research proposal that addressed a concern for mental health among women experiencing economic stress. After completion of the pilot research, the community researchers elected to participate in two dissemination efforts, including a manuscript reflecting on their research experience. Team successes, challenges, and recommendations for future training are discussed. Results: Each member of the CRFT pilot research team reflects on how training prepared community members to conduct CBPR research through development and implementation of a pilot research project. Community researchers gained experience in grant proposal development, choosing appropriate health interventions, conducting in-person surveys and telephone interviews, and disseminating study findings. Conclusions: Providing training in public health research before community/researcher collaboration can increase community capacity to engage in research as equitable partners in research question development, study design, and data interpretation and dissemination. The project success suggests that this and similar programs maximize the potential of community-academic health partnerships to address health disparities.

Biostatistics for clinical and public health research

Goodman, M. S. (n.d.). (1–).

Publication year

2017
Abstract
Abstract
Biostatistics for Clinical and Public Health Research provides a concise overview of statistical analysis methods. Use of SAS and Stata statistical software is illustrated in full, including how to interpret results. Focusing on statistical models without all the theory, the book is complete with exercises, case studies, take-away points, and data sets. Readers will be able to maximize their statistical abilities in hypothesis testing, data interpretation, and application while also learning when and how to consult a biostatistician. This book will be an invaluable tool for students and clinical and public health practitioners.

Descriptive Analysis of the 2014 Race-Based Healthcare Disparities Measurement Literature

Development of Plain Language Supplemental Materials for the Biobank Informed Consent Process

Drake, B. F., Brown, K. M., Gehlert, S., Wolf, L. E., Seo, J., Perkins, H., Goodman, M. S., & Kaphingst, K. A. (n.d.).

Publication year

2017

Journal title

Journal of Cancer Education

Volume

32

Issue

4

Page(s)

836-844
Abstract
Abstract
The US Department of Health and Human Services addresses clear communication in the informed consent process as part of the Notice of Proposed Rulemaking for revisions to the Common Rule. However, prior research has shown that participants may not fully comprehend research studies despite completion of an informed consent process. Our main goal was to provide plain language information about donation processes to a cancer biobank to supplement an informed consent form. We developed and conducted cognitive testing with supplemental brochures that clearly communicated information about three different models for consent (notice, broad and study-specific) to future use of biospecimens. During the brochure development process, we conducted qualitative, semi-structured, individual, in-person cognitive interviews among 14 women to examine participants’ perceptions of the brochures. Each participant provided feedback regarding the understandability, graphics and layout, and cultural appropriateness of the brochures. Our findings demonstrate that these methods may be used to tailor consent form brochures, such as the ones developed here, to other populations. This study therefore adds to our understanding of how best to present content to help women from two different racial groups make informed decisions about participation in a cancer biobank.

EVALUATING COMMUNITY ENGAGEMENT IN RESEARCH: QUANTITATIVE MEASURE DEVELOPMENT

Goodman, M. S., Thompson, V. L., Arroyo Johnson, C., Gennarelli, R., Drake, B. F., Bajwa, P., Witherspoon, M., & Bowen, D. (n.d.).

Publication year

2017

Journal title

Journal of Community Psychology

Volume

45

Issue

1

Page(s)

17-32
Abstract
Abstract
Although the importance of community engagement in research has been previously established, there are few evidence-based approaches for measuring the level of community engagement in research projects. A quantitative community engagement measure was developed, aligned with 11 engagement principles (EPs) previously established in the literature. The measure has 96 Likert response items; 3–5 quality items and 3–5 quantity items measure each EP. Cronbach's alpha is used to examine the internal consistency of items that measure a single EP. Every EP item group had a Cronbach's alpha >.85, which indicates strong internal consistency for all question groups across both scales (quality and quantity). This information determines the level of community engagement, which can be correlated with other research outcomes.

Increasing Community Research Capacity to Address Health Disparities

Komaie, G., Ekenga, C. C., Sanders Thompson, V. L., & Goodman, M. S. (n.d.).

Publication year

2017

Journal title

Journal of Empirical Research on Human Research Ethics

Volume

12

Issue

1

Page(s)

55-66
Abstract
Abstract
The Community Research Fellows Training program is designed to enhance capacity for community-based participatory research; program participants completed a 15-week, Master of Public Health curriculum. We conducted qualitative, semistructured interviews with 81 participants from two cohorts to evaluate the learning environment and how the program improved participants' knowledge of public health research. Key areas that provided a conducive learning environment included the once-a-week schedule, faculty and participant diversity, and community-focused homework assignments. Participants discussed how the program enhanced their understanding of the research process and raised awareness of public health-related issues for application in their personal lives, professional occupations, and in their communities. These findings highlight key programmatic elements of a successful public health training program for community residents.

Information Topics of Greatest Interest for Return of Genome Sequencing Results among Women Diagnosed with Breast Cancer at a Young Age

Seo, J., Ivanovich, J., Goodman, M. S., Biesecker, B. B., & Kaphingst, K. A. (n.d.).

Publication year

2017

Journal title

Journal of Genetic Counseling

Volume

26

Issue

3

Page(s)

511-521
Abstract
Abstract
We investigated what information women diagnosed with breast cancer at a young age would want to learn when genome sequencing results are returned. We conducted 60 semi-structured interviews with women diagnosed with breast cancer at age 40 or younger. We examined what specific information participants would want to learn across result types and for each type of result, as well as how much information they would want. Genome sequencing was not offered to participants as part of the study. Two coders independently coded interview transcripts; analysis was conducted using NVivo10. Across result types, participants wanted to learn about health implications, risk and prevalence in quantitative terms, causes of variants, and causes of diseases. Participants wanted to learn actionable information for variants affecting risk of preventable or treatable disease, medication response, and carrier status. The amount of desired information differed for variants affecting risk of unpreventable or untreatable disease, with uncertain significance, and not health-related. Women diagnosed with breast cancer at a young age recognize the value of genome sequencing results in identifying potential causes and effective treatments and expressed interest in using the information to help relatives and to further understand their other health risks. Our findings can inform the development of effective feedback strategies for genome sequencing that meet patients’ information needs and preferences.

Psychosocial and Clinical Factors Associated with Family Communication of Cancer Genetic Test Results among Women Diagnosed with Breast Cancer at a Young Age

Elrick, A., Ashida, S., Ivanovich, J., Lyons, S., Biesecker, B. B., Goodman, M. S., & Kaphingst, K. A. (n.d.).

Publication year

2017

Journal title

Journal of Genetic Counseling

Volume

26

Issue

1

Page(s)

173-181
Abstract
Abstract
Genetic test results have medical implications beyond the patient that extend to biological family members. We examined psychosocial and clinical factors associated with communication of genetic test results within families. Women (N = 1080) diagnosed with breast cancer at age 40 or younger completed an online survey; 920 women that reported prior cancer genetic testing were included in analysis. We examined the proportion of immediate family members to whom they communicated genetic test results, and built multivariable regression models to examine clinical and psychosocial variables associated with the proportion score. Participants were most likely to communicate test results to their mother (83 %) and least likely to their son (45 %). Participants who carried a BRCA mutation (OR = 1.34; 95 % CI = 1.06, 1.70), had higher interest in genomic information (OR = 1.55; 95 % CI = 1.26, 1.91) and lower genetic worry (OR = 0.91; 95 % CI = 0.86, 0.96) communicated genetic test results to a greater proportion of their immediate family members. Participants with a BRCA1/2 mutation shared their genetic test results with more male family members (OR = 1.72; 95 % CI = 1.02, 2.89). Our findings suggest that patients with high worry about genetic risks, low interest in genomic information, or receive a negative genetic test result will likely need additional support to encourage family communication.

Public Health Research Methods for Partnerships and Practice

Goodman, M. S., & Thompson, V. S. (n.d.). (1–).

Publication year

2017
Abstract
Abstract
Translating research into practice involves creating interventions that are relevant to improving the lives of a target population. Community engaged research has emerged as an evidence-based approach to better address the complex issues that affect the health of marginalized populations. Written by leading community-engaged researchers across disciplines, each chapter covers a different topic with comprehensive guides for start-to-finish planning and execution. The book provides a training curriculum that supports a common vision among stakeholders as well as a survey of methods based on core MPH curriculum. Practical appendices and homework samples can be found online. Public Health Research Methods for Partnerships and Practice will appeal to researchers and practitioners in community or government sectors interested in conducting community-engaged work.

Quantitative research methods

Goodman, M. S., & Zhang, L. (n.d.). In Public Health Research Methods for Partnerships and Practice (1–).

Publication year

2017

Page(s)

188-219
Abstract
Abstract
Quantitative research methods are often used in public health research and evaluation to determine the needs of a community or population, examine associations among multiple factors, and compare outcomes across subpopulations based on demographic characteristics (e.g., age, gender, race, education, income). Quantitative data and analysis can be used to provide strong evidence, but a basic understanding of the use and misuse of approaches is necessary to understand and interpret data. In this chapter, we discuss the strengths and weaknesses of quantitative research methods with a focus on survey research, questionnaire design, graphic methods, sampling methods, hypothesis testing, p-values, and odds ratios. The key elements and terminology (e.g., validity, reliability) of quantitative research methods and areas for concern (e.g., bias) are defined. Real-world examples are used to demonstrate concepts.

Reducing health disparities by removing cost, access, and knowledge barriers

Goodman, M., Onwumere, O., Milam, L., & Peipert, J. F. (n.d.).

Publication year

2017

Journal title

American Journal of Obstetrics and Gynecology

Volume

216

Issue

4

Page(s)

382.e1-382.e5
Abstract
Abstract
Background While the rate of unintended pregnancy has declined in the United States in recent years, unintended pregnancy among teens in the United States is the highest among industrialized nations, and disproportionately affects minority teens. Objective Our objective of this secondary analysis was to estimate the risk of unintended pregnancy for both Black and White teens age 15-19 years when barriers to access, cost, and knowledge are removed. Our hypothesis was that the Black-White disparities would be reduced when access, education, and cost barriers are removed. Study Design We performed an analysis of the Contraceptive CHOICE Project database. CHOICE is a longitudinal cohort study of 9256 sexually active girls and women ages 14-45 years in the St Louis, MO, region from 2007 through 2013. Two measures of disparities were used to analyze teenage pregnancy rates and pregnancy risk from 2008 through 2013 among teens ages 15-19 years. These rates were then compared to the rates of pregnancy among all sexually active teens in the United States during the years 2008, 2009, 2010, and 2011. We estimated an absolute measure (rate difference) and a relative measure (rate ratio) to examine Black-White disparities in the rates of unintended pregnancy. Results While national rates of unintended pregnancy are decreasing, racial disparities in these rates persist. The Black-White rate difference dropped from 158.5 per 1000 in 2008 to 120.1 per 1000 in 2011; however, the relative ratio disparity decreased only from 2.6-2.5, suggesting that Black sexually active teens in the United States have 2.5 times the rate of unintended pregnancy as White teenagers. In the CHOICE Project, there was a decreasing trend in racial disparities in unintended pregnancy rates among sexually active teens (age 15-19 years): 2008 through 2009 (rate difference, 18.2; rate ratio, 3.7), 2010 through 2011 (rate difference, 4.3; rate ratio, 1.2), and 2012 through 2013 (rate difference, –1.5; rate ratio, 1.0). Conclusion When barriers to cost, access, and knowledge were removed, such as in the Contraceptive CHOICE Project, Black-White disparities in unintended pregnancy rates among sexually active teens were reduced on both absolute and relative scales. The rate of unintended pregnancy was almost equal between Black and White teens compared to large Black-White disparities on the national level.

Systematic Review of Quantitative Measures of Stakeholder Engagement

Bowen, D. J., Hyams, T., Goodman, M., West, K. M., Harris-Wai, J., & Yu, J. H. (n.d.).

Publication year

2017

Journal title

Clinical and translational science

Volume

10

Issue

5

Page(s)

314-336

Breast reconstruction after mastectomy at a comprehensive cancer center

Connors, S. K., Goodman, M. S., Myckatyn, T., Margenthaler, J., & Gehlert, S. (n.d.).

Publication year

2016

Journal title

SpringerPlus

Volume

5

Issue

1
Abstract
Abstract
Background: Breast reconstruction after mastectomy is an integral part of breast cancer treatment that positively impacts quality of life in breast cancer survivors. Although breast reconstruction rates have increased over time, African American women remain less likely to receive breast reconstruction compared to Caucasian women. National Cancer Institute-designated Comprehensive Cancer Centers, specialized institutions with more standardized models of cancer treatment, report higher breast reconstruction rates than primary healthcare facilities. Whether breast reconstruction disparities are reduced for women treated at comprehensive cancer centers is unclear. The purpose of this study was to further investigate breast reconstruction rates and determinants at a comprehensive cancer center in St. Louis, Missouri. Methods: Sociodemographic and clinical data were obtained for women who received mastectomy for definitive surgical treatment for breast cancer between 2000 and 2012. Logistic regression was used to identify factors associated with the receipt of breast reconstruction. Results: We found a breast reconstruction rate of 54 % for the study sample. Women who were aged 55 and older, had public insurance, received unilateral mastectomy, and received adjuvant radiation therapy were significantly less likely to receive breast reconstruction. African American women were 30 % less likely to receive breast reconstruction than Caucasian women. Conclusion: These findings suggest that racial disparities in breast reconstruction persist in comprehensive cancer centers. Future research should further delineate the determinants of breast reconstruction disparities across various types of healthcare institutions. Only then can we develop interventions to ensure all eligible women have access to breast reconstruction and the improved quality of life it affords breast cancer survivors.

Comparing treatment and outcomes of ductal carcinoma in situ among women in Missouri by race

Madubata, C. C., Liu, Y., Goodman, M. S., Yun, S., Yu, J., Lian, M., & Colditz, G. A. (n.d.).

Publication year

2016

Journal title

Breast Cancer Research and Treatment

Volume

160

Issue

3

Page(s)

563-572
Abstract
Abstract
Purpose: To investigate whether treatment (surgery, radiation therapy, and endocrine therapy) contributes to racial disparities in outcomes of ductal carcinoma in situ (DCIS). Patients and methods: The analysis included 8184 non-Hispanic White and 954 non-Hispanic Black women diagnosed with DCIS between 1996 and 2011 and identified in the Missouri Cancer Registry. Logistic regression models were used to estimate odds ratios (ORs) of treatment for race. We used Cox proportional hazards regression models to estimate hazard ratios (HRs) of ipsilateral breast tumor (IBT) and contralateral breast tumor (CBT) for race. Results: There was no significant difference between Black and White women in utilization of mastectomy (OR 1.16; 95 % CI 0.99–1.35) or endocrine therapy (OR 1.19; 95 % CI 0.94–1.51). Despite no significant difference in underutilization of radiation therapy (OR 1.14; 95 % CI 0.92–1.42), Black women had higher odds of radiation delay, defined as at least 8 weeks between surgery and radiation (OR 1.92; 95 % CI 1.55–2.37). Among 9138 patients, 184 had IBTs and 326 had CBTs. Black women had a higher risk of IBTs (HR 1.69; 95 % CI 1.15–2.50) and a comparable risk of CBTs (HR 1.19; 95 % CI 0.84–1.68), which were independent of pathological features and treatment. Conclusion: Racial differences in DCIS treatment and outcomes exist in Missouri. This study could not completely explain the higher risk of IBTs in Black women. Future studies should identify differences in timely initiation and completion of treatment, which may contribute to the racial difference in IBTs after DCIS.

Differences in preferences for models of consent for biobanks between Black and White women

Brown, K. M., Drake, B. F., Gehlert, S., Wolf, L. E., DuBois, J., Seo, J., Woodward, K., Perkins, H., Goodman, M. S., & Kaphingst, K. A. (n.d.).

Publication year

2016

Journal title

Journal of Community Genetics

Volume

7

Issue

1

Page(s)

41-49
Abstract
Abstract
Biobanks are essential resources, and participation by individuals from diverse groups is needed. Various models of consent have been proposed for secondary research use of biospecimens, differing in level of donor control and information received. Data are needed regarding participant preferences for models of consent, particularly among minorities. We conducted qualitative semi-structured interviews with 60 women to examine their attitudes about different models of consent. Recruitment was stratified by race (Black/White) and prior biobank participation (yes/no). Two coders independently coded interview transcripts. Qualitative thematic analysis was conducted using NVivo 10. The majority of Black and White participants preferred “broad” consent (i.e., blanket permission for secondary research use of biospecimens), and the second most preferred model for both groups was “study-specific” consent (i.e., consent for each future research study). The qualitative analysis showed that participants selected their most preferred model for 3 major reasons: having enough information, having control over their sample, and being asked for permission. Least preferred was notice model (i.e., participants notified that biospecimens may be used in future research). Attitudes toward models of consent differed somewhat by race and prior biobank participation. Participants preferred models of consent for secondary research use of biospecimens that provided them with both specific and general information, control over their biospecimens, and asked them to give permission for use. Our findings suggest that it will be important for researchers to provide information about future uses of biospecimens to the extent possible and have an explicit permission step for secondary research use.

Does learning about race prevent substance abuse? Racial discrimination, racial socialization and substance use among African Americans

Thompson, A. B., Goodman, M. S., & Kwate, N. O. A. (n.d.).

Publication year

2016

Journal title

Addictive Behaviors

Volume

61

Page(s)

1-7

Estimates of mental health problems in a vulnerable population within a primary care setting

Hudson, D. L., Kaphingst, K. A., Croston, M. A., Blanchard, M. S., & Goodman, M. S. (n.d.).

Publication year

2016

Journal title

Journal of health care for the poor and underserved

Volume

27

Issue

1

Page(s)

308-326
Abstract
Abstract
We examined the prevalence of mental disorders in a primary care setting affiliated with a large academic medical center. We also examined whether there were racial differences in mental health disorders. Patients were seeking medical care in an outpatient medical clinic; mental health data were available for them via medical records (n=767). Overall, 45% of patients had a diagnosed mental health problem; the most commonly reported form of mental disorder was depression. African Americans (OR= 1.88; CI: 1.21– 2.91) were more likely than Whites to have a diagnosed mental health problem. These results suggest a strong mental health treatment need among patients seeking primary care in urban settings. The evidence garnered from this study underscores the need to detect and treat mental health problems systematically within outpatient primary care clinics that serve similarly vulnerable populations.

How, who, and when: Preferences for delivery of genome sequencing results among women diagnosed with breast cancer at a young age

Kaphingst, K. A., Ivanovich, J., Elrick, A., Dresser, R., Matsen, C., & Goodman, M. S. (n.d.).

Publication year

2016

Journal title

Molecular Genetics and Genomic Medicine

Volume

4

Issue

6

Page(s)

684-695
Abstract
Abstract
Background The increasing use of genome sequencing with patients raises a critical communication challenge: return of secondary findings. While the issue of what sequencing results should be returned to patients has been examined, much less attention has been paid to developing strategies to return these results in ways that meet patients’ needs and preferences. To address this, we investigated delivery preferences (i.e., who, how, when) for individual genome sequencing results among women diagnosed with breast cancer at age 40 or younger. Methods We conducted 60 semistructured, in-person individual interviews to examine preferences for the return of different types of genome sequencing results and the reasons underlying these preferences. Two coders independently coded interview transcripts; analysis was conducted using NVivo 10. Results The major findings from the study were that: (1) many participants wanted sequencing results as soon as possible, even at the time of breast cancer diagnosis; (2) participants wanted an opportunity for an in-person discussion of results; and (3) they put less emphasis on the type of person delivering results than on the knowledge and communicative skills of that person. Participants also emphasized the importance of a results return process tailored to a patient’s individual circumstances and one that she has a voice in determining. Conclusions A critical goal for future transdisciplinary research including clinicians, patients, and communication researchers may be to develop decision-making processes to help patients make decisions about how they would like various sequencing results returned.

Importance of race and ethnicity in individuals' use of and responses to genomic information

Kaphingst, K. A., & Goodman, M. S. (n.d.).

Publication year

2016

Journal title

Personalized Medicine

Volume

13

Issue

1

Page(s)

1-4

Preferences for return of incidental findings from genome sequencing among women diagnosed with breast cancer at a young age

Kaphingst, K. A., Ivanovich, J., Biesecker, B. B., Dresser, R., Seo, J., Dressler, L. G., Goodfellow, P. J., & Goodman, M. S. (n.d.).

Publication year

2016

Journal title

Clinical Genetics

Volume

89

Issue

3

Page(s)

378-384
Abstract
Abstract
While experts have made recommendations, information is needed regarding what genome sequencing results patients would want returned. We investigated what results women diagnosed with breast cancer at a young age would want returned and why. We conducted 60 semi-structured, in-person individual interviews with women diagnosed with breast cancer at age 40 or younger. We examined interest in six types of incidental findings and reasons for interest or disinterest in each type. Two coders independently coded interview transcripts; analysis was conducted using NVivo 10. Most participants were at least somewhat interested in all six result types, but strongest interest was in actionable results (i.e. variants affecting risk of a preventable or treatable disease and treatment response). Reasons for interest varied between different result types. Some participants were not interested or ambivalent about results not seen as currently actionable. Participants wanted to be able to choose what results are returned. Participants distinguished between types of individual genome sequencing results, with different reasons for wanting different types of information. The findings suggest that a focus on actionable results can be a common ground for all stakeholders in developing a policy for returning individual genome sequencing results.

Racial and ethnic heterogeneity in self-reported diabetes prevalence trends across hispanic subgroups, National Health Interview Survey, 1997-2012

Arroyo-Johnson, C., Mincey, K. D., Ackermann, N., Milam, L., Goodman, M. S., & Colditz, G. A. (n.d.).

Publication year

2016

Journal title

Preventing Chronic Disease

Volume

13

Issue

1
Abstract
Abstract
Introduction: We examined racial/ethnic heterogeneity in self-reported diabetes prevalence over 15 years. Methods: We used National Health Interview Survey data for 1997 through 2012 on 452,845 adults aged 18 years or older. Annual self-reported diabetes prevalence was estimated by race/ethnicity and education. We tested for trends over time by education and race/ethnicity. We also analyzed racial/ethnic and education trends in average annual prevalence. Results: During the 15 years studied, diabetes prevalence differed significantly by race/ethnicity (P < .001) and by Hispanic subgroup (P < .001). Among participants with less than a high school education, the 5-year trend in diabetes prevalence was highest among Cubans and Cuban Americans (β5YR = 4.8, P = .002), Puerto Ricans (β5YR = 2.2, P = .06), non-Hispanic blacks (β5YR = 2.2, P < .001), and non-Hispanic whites (β5YR = 2.1, P < .001). Among participants with more than a high school education, non-Hispanic blacks had the highest average annual prevalence (5.5%) and Puerto Ricans had the highest 5-year trend in annual diabetes prevalence (β5YR = 2.6, P = .001). Conclusions: In this representative sample of US adults, results show ethnic variations in diabetes prevalence. The prevalence of diabetes is higher among Hispanics than among non-Hispanic whites, unevenly distributed across Hispanic subgroups, and more pronounced over time and by education. Findings support disaggregation of data for racial/ethnic populations in the United States to monitor trends in diabetes disparities and the use of targeted, culturally appropriate interventions to prevent diabetes.

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