Melody Goodman
Melody Goodman
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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 work is anchored upon moving beyond defining problems and focuses on developing solutions using partner-engaged research approaches. Dr. Goodman’s research efforts seek to develop a more rigorous understanding of the social risk factors contributing to urban health outcomes. Her work aims to develop solutions for improving health in high-risk populations. She conducts translational research that bridges the gap between research and practice. Through rigorous attention to study design, measurement, and the use of cutting-edge statistical analysis methods, her contributions have spanned the areas of prevention, treatment, intervention, and policy.
Dr. Goodman led the team that developed and comprehensively evaluated the Research Engagement Survey Tool, a quantitative survey measure to assess the level of partner engagement in research studies from the non-academic partner perspective. 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 150 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, which now has a second edition (2026 Routledge/Taylor & Francis Group). She is a Fellow of the American Statistical Association, New York Academy of Medicine, and the inaugural recipient of the Societal Impact Award from the Caucus for Women in Statistics.
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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, 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 ProgramsQuantitative Research
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Publications
Publications
Comparison of unintended pregnancy at 12 months between two contraceptive care programs; a controlled time-trend design
AbstractMadden, T., Paul, R., Maddipati, R., Buckel, C., Goodman, M., & Peipert, J. F. (n.d.).Publication year
2019Journal title
ContraceptionVolume
100Issue
3Page(s)
196-201AbstractObjectives: To compare unintended pregnancy rates at 12 months between women receiving structured contraceptive counseling plus usual contraceptive care and women receiving structured contraceptive counseling, healthcare provider education and cost support for long-acting reversible contraceptive (LARC) methods. Study design: Using a controlled time-trend study design, we first enrolled 502 women receiving structured contraceptive counseling in addition to usual care (“Enhanced Care”) and subsequently enrolled 506 women receiving counseling plus healthcare provider education and cost support for LARC methods (“Complete CHOICE”) at three federally qualified health centers (FQHCs). Cost support included funds to health centers for “on-the-shelf” LARC methods and no-cost LARC methods for uninsured women. Participants completed in-person baseline surveys and follow-up surveys by telephone at 3, 6 and 12 months. We used Kaplan–Meier survival function to estimate 12-month unintended pregnancy rates and Cox proportional-hazards regression to compare unintended pregnancy rates between the two groups. We imputed pregnancy outcomes for women lost to follow-up (9%) prior to 12 months. Results: “Complete CHOICE” participants were less likely to report an unintended pregnancy at 12 months compared to “Enhanced Care”; 5.3 vs. 9.8 pregnancies per 100 women-years (p=.01). After adjusting for confounders (recruitment site, race, age and federal poverty level), women in “Complete CHOICE” had a 40% lower risk of unintended pregnancy at 12 months (adjusted hazard ratio 0.60; 95% confidence interval 0.37–0.99). Conclusions: Contraceptive provision that includes cost support and healthcare provider education in addition to patient counseling reduced unintended pregnancy at 12 months compared to counseling plus usual contraceptive care. Implications: A program of contraceptive care that includes comprehensive counseling; healthcare provider education; cost support; and on-the-shelf, long-acting reversible contraception can reduce unintended pregnancy compared to contraceptive counseling in addition to usual health center care in the FQHC setting.Content validation of a quantitative stakeholder engagement measure
AbstractGoodman, M., Ackermann, N., Bowen, D. J., & Thompson, V. (n.d.).Publication year
2019Journal title
Journal of Community PsychologyVolume
47Issue
8Page(s)
1937-1951AbstractAim: Using a stakeholder-engaged approach, this study conducted content validation and item reduction of a quantitative measure of research engagement. Methods: A five-round modified Delphi process was used to reach consensus on items. Rounds 1–3 and 5 were conducted using web-based surveys. Round 4 consisted of a 2-day, in-person meeting. Delphi panelists received individualized reports outlining individual and aggregate group responses after rounds 1–3. Results: Over the five-round process, items were added, dropped, modified, and moved from one engagement principle to another. The number of items was reduced from 48 to 32, with three to five items corresponding to eight engagement principles. Conclusions: Research that develops standardized, reliable, and accurate measures to assess stakeholder engagement is essential to understanding the impact of engagement on scientific discovery and the scientific process. Valid quantitative measures to assess stakeholder engagement in research are necessary to assess associations between engagement and research outcomes.Decision role preferences for return of results from genome sequencing amongst young breast cancer patients
AbstractMatsen, C. B., Lyons, S., Goodman, M., Biesecker, B. B., & Kaphingst, K. A. (n.d.).Publication year
2019Journal title
Patient Education and CounselingVolume
102Issue
1Page(s)
155-161AbstractObjective: To better understand decision role preferences in women diagnosed with breast cancer at a young age for return of results of genome sequencing in research and clinical settings. Methods: Participants were surveyed about communication and decision-making preferences related to genome sequencing results and factors that may affect these preferences. The primary outcome was decision role preference (Control Preference Scale) for selecting what results to receive within medical care or within a research study. Results: For results returned as part of medical care, most patients preferred a collaborative (N = 481, 45%) or active (N = 488, 45%) role with only 107 (10%) choosing a passive role. When making the decision as part of a research study, most patients preferred an active role (N = 617, 57%), 350 (33%) choosing a collaborative role, and110 (10%) choosing a passive role. Conclusion: Most women in this study preferred to share in decision making. Participants had somewhat different role preferences for clinical and research contexts, with greater preference for active roles in the research context. Practice Implications: We advocate for practice guidelines that incorporate discussion of decision role as an integral part of patient centered care and shared decision-making and recognize that more work is needed to inform guidelines.Effect of staff training and cost support on provision of long-acting reversible contraception in community health centers
AbstractBuckel, C., Maddipati, R., Goodman, M., Peipert, J. F., & Madden, T. (n.d.).Publication year
2019Journal title
ContraceptionVolume
99Issue
4Page(s)
222-227AbstractObjective: To compare the proportion of women receiving same-day long-acting reversible contraception (LARC) between two different models of contraceptive provision adapted from the Contraceptive CHOICE Project. Study Design: We used a controlled time-trend study design to compare 502 women receiving structured contraceptive counseling in addition to usual care (“Enhanced Care”) to 506 women receiving counseling plus healthcare provider education and cost support for LARC (“Complete CHOICE”) at three federally qualified health centers. We provided funds to health centers to ensure an “on-the-shelf” supply and no-cost LARC for uninsured women. We recorded the contraceptive method chosen after contraceptive counseling and the healthcare provider appointment as well as the contraceptive method received that day. Among women choosing LARC, we calculated proportions and performed Poisson regression with robust error variance to estimate relative risks for same-day insertion. Results: Participant demographics reflected the health center populations; 69% were black, 66% had a high school diploma or less, 57% were publicly insured, and 75% reported household income less than 101% federal poverty line. There were 153 (30.5%) women in “Enhanced Care” and 273 (54.0%) in “Complete CHOICE” who chose LARC (pFactors affecting breast cancer patients' need for genetic risk information : From information insufficiency to information need
AbstractHong, S. J., Biesecker, B., Ivanovich, J., Goodman, M., & Kaphingst, K. A. (n.d.).Publication year
2019Journal title
Journal of Genetic CounselingVolume
28Issue
3Page(s)
543-557AbstractInformation-seeking models typically focus on information-seeking behaviors based on individuals' interest in information, because their current level is perceived to be insufficient. In the context of genetic risk information (GRI), however, information insufficiency is difficult to measure and thus can limit understanding of information behavior in the context of GRI. We propose that an individual's need for information might be a more direct and conceptually clearer alternative to predicting their information-seeking behavior. To test this hypothesis, this study investigates the extent to which previously identified factors affecting interest in GRI are also predictors of need for GRI among women diagnosed with breast cancer at the age of 40 or younger (N = 1,069). As hypothesized, there was a positive association between interest in and need for GRI. Furthermore, hypothesized factors of numeracy, information orientation, and genetic knowledge were significant predictors of increased interest in and need for GRI. In contrast, hypothesized factors of genetic worry and genetic causal belief predicted increased interest in GRI only, while genetic self-efficacy predicted increased need for GRI only. As hypothesized, BRCA status significantly moderated associations between informational norm and both interest in and need for GRI. Collectively, the findings support inclusion of need for GRI in theoretical information-seeking models in the context of genomic risk.How neighborhoods matter in fatal interactions between police and men of color
AbstractJohnson, O., St. Vil, C., Gilbert, K. L., Goodman, M., & Johnson, C. A. (n.d.).Publication year
2019Journal title
Social Science and MedicineVolume
220Page(s)
226-235AbstractThis article addresses the concern that death by legal intervention is a health outcome disproportionately experienced by boys and men of color, and predicated on the quality of the locations in which encounters with law enforcement occur. Using a more comprehensive cross-verified sample of police homicides from online databases and a nationally representative sample of law enforcement agencies, this study examines whether neighborhood social disorganization, minority threat, and defense of inequality theories help explain the odds that males of color will have a fatal interaction with police (FIP). There are several noteworthy results. First, in support of the defense of inequality thesis, we found that income inequality within the area in which a FIP occurred is related to increased relative odds of fatal injury for males of color and Hispanic males. Second, consistent with the minority threat thesis, we found low levels of racial segregation dramatically reduced the odds of a FIP for Black males while higher levels of segregation increased the odds for Hispanic males. Third, Hispanic males were over 2.6 times as likely as others to be killed by officers from agencies with relatively higher percentages of Hispanic officers. We conclude the study with a discussion of its implications for research and policy.Adaptation, Implementation, and Evaluation of a Public Health Research Methods Training for Youth
AbstractGoodman, M., Gbaje, E., Yassin, S. M., Johnson DIas, J., Gilbert, K., & Thompson, V. (n.d.).Publication year
2018Journal title
Health EquityVolume
2Issue
1Page(s)
349-355AbstractPurpose: To adapt, implement, and evaluate a public health research methods training program for youth. The Community Research Fellows Training Program is an evidence-based public health research methods training program for adults (18 years and older). The Youth Research Fellows Training (YRFT) is an adaptation of this program for youth. Methods: University faculty facilitate didactic training sessions and experiential small group activities in biweekly sessions conducted as part of an existing 4-week summer camp. Participants were African American girls (n=11) ranging from ages 10 to 14 years (most recent grade completed 4th-8th). To evaluate participant knowledge gain and satisfaction pre-tests were administered before each session, and post-test and evaluations were administered after each session. In addition, faculty completed web-based evaluation surveys on their experience teaching in the program. Results: Mean and median post-test scores were higher than pre-test scores for most (6 of the 7) of the training sessions; one session had no difference in scores. Participants rated the sessions well, on average overall session ratings of 4.3-4.8 on a 5-point Likert scale. Faculty rated their experience teaching in the program as excellent or very good and would be willing to teach in the program again (n=7; 100%). Conclusion: This pilot implementation of the YRFT program proved highly successful in terms of participant and faculty experience. The program evaluation demonstrates increased knowledge of public health research methods. This program has the potential to prepare youth to engage in public health research as partners not just participants.Are You Making an Impact? Evaluating the Population Health Impact of Community Benefit Programs
AbstractRains, C. M., Todd, G., Kozma, N., & Goodman, M. (n.d.).Publication year
2018Journal title
Journal of Public Health Management and PracticeVolume
24Issue
4Page(s)
335-339AbstractContext: The Patient Protection and Affordable Care Act includes a change to the IRS 990 Schedule H, requiring nonprofit hospitals to submit a community health needs assessment every 3 years. Such health care entities are challenged to evaluate the effectiveness of community benefit programs addressing the health needs identified. Objective: In an effort to determine the population health impact of community benefit programs in 1 hospital outreach department, researchers and staff conducted an impact evaluation to develop priority areas and overarching goals along with program- and department-level objectives. Design: The longitudinal impact evaluation study design consists of retrospective and prospective secondary data analyses. Setting: As an urban pediatric hospital, St Louis Children's Hospital provides an array of community benefit programs to the surrounding community. Participants: Hospital staff and researchers came together to form an evaluation team. Data from program evaluation and administrative data for analysis were provided by hospital staff. Main Outcome Measure: Impact scores were calculated by scoring objectives as met or unmet and averaged across goals to create impact scores that measure how closely programs meet the overarching departmental mission and goals. Results: Over the 4-year period, there is an increasing trend in program-specific impact scores across all programs except one, Healthy Kids Express Asthma, which had a slight decrease in year 4 only. Implications: Current work in measuring and assessing the population health impact of community benefit programs is mostly focused on quantifying dollars invested into community benefit work rather than measuring the quality and impact of services. This article provides a methodology for measuring population health impact of community benefit programs that can be used to evaluate the effort of hospitals in providing community benefit. This is particularly relevant in our changing health care climate, as hospitals are being asked to justify community benefit and make meaningful contributions to population health. The Patient Protection and Affordable Care Act includes a change to the IRS 990 Schedule H, requiring nonprofit hospitals to submit a community health needs assessment every 3 years, and requires evaluation of program effectiveness; yet, it does not require any quantification of the impact of community benefit programs. The IRS Schedule H 990 policies could be strengthened by requiring an impact evaluation such as outlined in this article. Conclusion: As hospitals are being asked to justify community benefit and make meaningful contributions to population health, impact evaluations can be utilized to demonstrate the cumulative community benefit of programs and assess population health impact of community benefit programs.For the Sake of All : Civic Education on the Social Determinants of Health and Health Disparities in St. Louis
AbstractPurnell, 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
2018Journal title
Urban EducationVolume
53Issue
6Page(s)
711-743AbstractCivic 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
AbstractGoodman, M., Lyons, S., Dean, L. T., Arroyo, C., & Hipp, J. A. (n.d.).Publication year
2018Journal title
Frontiers in Public HealthVolume
6Issue
MARAbstractObjectives: 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
AbstractKomaie, G., Gilbert, K. L., Arroyo, C., & Goodman, M. (n.d.).Publication year
2018Journal title
Pedagogy in Health PromotionVolume
4Issue
2Page(s)
108-114AbstractPhotovoice 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
AbstractKaphingst, K. A., Ivanovich, J., Lyons, S., Biesecker, B., Dresser, R., Elrick, A., Matsen, C., & Goodman, M. (n.d.).Publication year
2018Journal title
Translational Behavioral MedicineVolume
8Issue
1Page(s)
71-79AbstractThe 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-valuesSocial factors matter in cancer risk and survivorship
AbstractDean, L. T., Gehlert, S., Neuhouser, M. L., Oh, A., Zanetti, K., Goodman, M., Thompson, B., Visvanathan, K., & Schmitz, K. H. (n.d.).Publication year
2018Journal title
Cancer Causes and ControlVolume
29Issue
7Page(s)
611-618AbstractGreater attention to social factors, such as race/ethnicity, socioeconomic position, and others, are needed across the cancer continuum, including breast cancer, given differences in tumor biology and genetic variants have not completely explained the persistent Black/White breast cancer mortality disparity. In this commentary, we use examples in breast cancer risk assessment and survivorship to demonstrate how the failure to appropriately incorporate social factors into the design, recruitment, and analysis of research studies has resulted in missed opportunities to reduce persistent cancer disparities. The conclusion offers recommendations for how to better document and use information on social factors in cancer research and care by (1) increasing education and awareness about the importance of inclusion of social factors in clinical research; (2) improving testing and documentation of social factors by incorporating them into journal guidelines and reporting stratified results; and (3) including social factors to refine extant tools that assess cancer risk and assign cancer care. Implementing the recommended changes would enable more effective design and implementation of interventions and work toward eliminating cancer disparities by accounting for the social and environmental contexts in which cancer patients live and are treated.Training Community Members in Public Health Research : Development and Implementation of a Community Participatory Research Pilot Project
AbstractKomaie, G., Goodman, M., McCall, A., McGill, G., Patterson, C., Hayes, C., & Sanders Thompson, V. (n.d.).Publication year
2018Journal title
Health EquityVolume
2Issue
1Page(s)
282-287AbstractPurpose: 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
AbstractAbstractBiostatistics 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.Conclusion : CRFT program implementation and evaluation
AbstractGoodman, M., & Thompson, V. S. (n.d.).Publication year
2017Page(s)
316-327Abstract~Descriptive Analysis of the 2014 Race-Based Healthcare Disparities Measurement Literature
AbstractGoodman, M., Gilbert, K. L., Hudson, D., Milam, L., & Colditz, G. A. (n.d.).Publication year
2017Journal title
Journal of Racial and Ethnic Health DisparitiesVolume
4Issue
5Page(s)
796-802AbstractImportance: There are more than 500 articles in the 2014 race-based healthcare disparities literature across a broad array of diseases and outcomes. However, unlike many other forms of research (e.g., clinical trials and systematic reviews), there are no required reporting guidelines when submitting results of disparities studies to journals. Objective: This study describes the race-based healthcare disparities measurement literature in terms of study design, journal characteristics, generation of health disparities research, type of disparity measure used, and adherence to disparities measurement guidelines. Methods: We searched three databases of peer-reviewed literature, PubMed, Ovid Medline, and JSTOR, for English language articles published in 2014 on racial/ethnic healthcare disparities. Studies must have quantitatively measured the difference in health outcomes between two racial/ethnic groups in order to be included. Our final sample included 266 studies from 167 medical and public health journals. Findings: Only 7 % (n = 19) of articles reported both an absolute and relative measure of disparity; the majority of studies (64 %, n = 171) reported only a relative measure of effect. Most studies were published in clinical journals (74 %, n = 198), used secondary data (86 %, n = 229), and calculated black-white disparities (82 %, n = 218). The most common condition studied was cancer (25 %, n = 67), followed by a surgical procedure (18 %, n = 48). On average, articles in the sample only met 61 % of the applicable guidelines on reporting of disparities. Conclusions and Relevance: To be able to synthesize findings in the racial disparities literature (meta-analysis), there is a need for the use of consistent methods for quantifying disparities and reporting in the literature. A more consistent battery of measures and consistent reporting across studies may help speed our understanding of the origins and development of solutions to address healthcare disparities. Despite guidelines for best practices in reporting disparities, there is a lack of adherence in the current literature.Development of Plain Language Supplemental Materials for the Biobank Informed Consent Process
AbstractDrake, B. F., Brown, K. M., Gehlert, S., Wolf, L. E., Seo, J., Perkins, H., Goodman, M., & Kaphingst, K. A. (n.d.).Publication year
2017Journal title
Journal of Cancer EducationVolume
32Issue
4Page(s)
836-844AbstractThe 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
AbstractGoodman, M., Thompson, V. L., Arroyo Johnson, C., Gennarelli, R., Drake, B. F., Bajwa, P., Witherspoon, M., & Bowen, D. (n.d.).Publication year
2017Journal title
Journal of Community PsychologyVolume
45Issue
1Page(s)
17-32AbstractAlthough 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
AbstractKomaie, G., Ekenga, C. C., Sanders Thompson, V. L., & Goodman, M. (n.d.).Publication year
2017Journal title
Journal of Empirical Research on Human Research EthicsVolume
12Issue
1Page(s)
55-66AbstractThe 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
AbstractSeo, J., Ivanovich, J., Goodman, M., Biesecker, B. B., & Kaphingst, K. A. (n.d.).Publication year
2017Journal title
Journal of Genetic CounselingVolume
26Issue
3Page(s)
511-521AbstractWe 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.Introduction
AbstractGoodman, M., & Thompson, V. S. (n.d.).Publication year
2017Page(s)
xiii-xxAbstract~Psychosocial and Clinical Factors Associated with Family Communication of Cancer Genetic Test Results among Women Diagnosed with Breast Cancer at a Young Age
AbstractElrick, A., Ashida, S., Ivanovich, J., Lyons, S., Biesecker, B. B., Goodman, M., & Kaphingst, K. A. (n.d.).Publication year
2017Journal title
Journal of Genetic CounselingVolume
26Issue
1Page(s)
173-181AbstractGenetic 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
AbstractAbstractTranslating 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
AbstractAbstractQuantitative 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.