Melody Goodman

Goodman, Melody
Melody Goodman

Associate Dean for Research

Associate Professor of Biostatistics

Professional overview

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.

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

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

Impact of numeracy preferences on information needs for genome sequencing results

Albrechtsen, R. D., Goodman, M. S., Bather, J. R., & Kaphingst, K. A.

Publication year

2021

Journal title

Patient Education and Counseling

Volume

104

Issue

3

Page(s)

467-472
Abstract
Abstract
Objective: This study investigated how self-reported numeracy ability and preferences predict preferences for the amount and types of information provided about genome sequencing results among 1080 women diagnosed with breast cancer at age 40 or younger. Methods: Participants reported their level of interest in 14 topics related to genome sequencing results on a survey. We calculated a Participant Information Needs (PIN) value based on the number of topics for which a participant wanted “a lot” of information. Numeracy was assessed using the Subjective Numeracy Scale. Analyses examined associations between the numeracy ability and preferences subscales, information needs for individual content topics, and PIN. Results: Higher preference for numeric data was correlated with increased PIN (β = 0.60, p < 0.01), while numeric ability was not correlated (β=0.16, p = 0.22). Family composition and knowledge about sequencing benefits were also significant covariates. Patients most preferred information on topics related to disease risk and health implications. Conclusion: There may be utility in separating numeracy ability and preferences into two components in future research in order to investigate how numeracy impacts the return of genetic testing results. Practice Implications: These data suggest that numeracy preferences may be important to inform strategies for the return of genetic results.

Psychometric Validation of a Scale to Assess Culturally-Salient Aspects of HIV Stigma Among Women Living with HIV in Botswana: Engaging “What Matters Most” to Resist Stigma

Yang, L. H., Ho-Foster, A. R., Becker, T. D., Misra, S., Rampa, S., Poku, O. B., Entaile, P., Goodman, M., & Blank, M. B.

Publication year

2021

Journal title

AIDS and Behavior

Volume

25

Issue

2

Page(s)

459-474
Abstract
Abstract
Perceived stigma deters engagement in HIV care and is powerfully shaped by culture. Yet few stigma measures consider how cultural capabilities that signify “full personhood” could be engaged to resist stigma. By applying a theory conceptualizing how culturally-salient mechanisms can worsen or mitigate HIV stigma in relation to “what matters most” (WMM), we developed the WMM Cultural Stigma Scale for Women Living with HIV in Botswana (WMM-WLHIV-BW) and psychometrically evaluated it among 201 respondents with known and unknown HIV status. The two subscales, Cultural Factors Shape Stigma (CFSS) and Cultural Capabilities Protect against Stigma (CCPS) were reliable (both α= 0.90). Among WLHIV, the CFSS Subscale showed initial construct validity with depressive symptoms (r =.39, p =.005), similar to an established HIV stigma scale, whereas the CCPS Subscale showed initial construct validity with self-esteem (r =.32, p =.026) and social support number (r =.29, p =.047), suggesting that achieving local cultural capabilities mitigates stigma and is linked with positive psychosocial outcomes. This culturally-derived scale could help WLHIV in Botswana experience improved stigma-related outcomes.

Strategies of community engagement in research: Definitions and classifications

Thompson, V. L., Ackermann, N., Bauer, K. L., Bowen, D. J., & Goodman, M. S.

Publication year

2021

Journal title

Translational Behavioral Medicine

Volume

11

Issue

2

Page(s)

441-451
Abstract
Abstract
Engagement activities are defined along a continuum that analyzes and represents nonacademic stakeholder activities and interactions with academic researchers. Proposed continua begin with none to limited stakeholder inclusion and input into research and continue with descriptions of increasing presence, input, and participation in decision-making. Despite some agreement in the literature, development of consistent terminology and definitions has been recommended to promote the common understanding of strategies in engaged research. This paper sought to develop and understand classifications and definitions of community-engaged research that can serve as the foundation of a measure of engaged research that permits comparisons among engagement strategies and the outcomes that they produce in health-and healthcare-related research studies. Data on academic and stakeholder perceptions and understandings of classifications and definitions were obtained using Delphi process (N = 19) via online and face-to-face survey and cognitive response interviews (N = 16). Participants suggested the need for more nuanced understanding of engagement along portions of the continuum, with active involvement and decision-making as engagement progressed. Cognitive interview responses suggested that outreach and education is a more advanced level of engagement than previously discussed in the literature and viewed consultation negatively because it required work without guaranteeing community benefit. It is possible to define a continuum of patient-and community-engaged research that is understood and accepted by both academic researchers and community members. However, future research should revisit the understanding and depiction of the strategies that are to be used in measure development.

Community partners' responses to items assessing stakeholder engagement: Cognitive response testing in measure development

Mothers moving towards empowerment' intervention to reduce stigma and improve treatment adherence in pregnant women living with HIV in Botswana: Study protocol for a pragmatic clinical trial

Poku, O. B., Ho-Foster, A. R., Entaile, P., Misra, S., Mehta, H., Rampa, S., Goodman, M., Arscott-Mills, T., Eschliman, E., Jackson, V., Melese, T., Becker, T. D., Eisenberg, M., Link, B., Go, V., Opondo, P. R., Blank, M. B., & Yang, L. H.

Publication year

2020

Journal title

Trials

Volume

21

Issue

1
Abstract
Abstract
Background: With high rates of HIV and multiple vulnerable subgroups across diverse settings, there is a need for culturally based, HIV stigma reduction interventions. Pregnant women who are living with HIV are especially in need of services to protect not only their own but also their children's lives. Uptake of HIV services worldwide is hindered by stigma towards persons living with HIV/AIDS. While cultural context plays a key role in shaping HIV stigma, these insights have not yet been fully integrated into stigma reduction strategies. By utilizing the "What Matters Most"stigma framework, we propose that an intervention to counter culturally salient aspects of HIV stigma will improve treatment adherence and other relevant outcomes. A pragmatic clinical trial in Botswana will evaluate the "Mothers Moving towards Empowerment"(MME) intervention, which seeks to address HIV stigma in Botswana and to specifically engage pregnant mothers so as to promote antiretroviral therapy (ART) adherence in the postpartum period. Methods: This study will test MME against treatment as usual (TAU) among pregnant mothers diagnosed with HIV and their infants. Outcomes will be assessed during pregnancy and 16 weeks postpartum. Women who meet eligibility criteria are assigned to MME or TAU. Women assigned to MME are grouped with others with similar estimated delivery dates, completing up to eight intervention group sessions scheduled before week 36 of their pregnancies. Primary outcomes among mothers include (i) reducing self-stigma, which is hypothesized to mediate improvements in (ii) psychological outcomes (quality of life, depression and social functioning), and (iii) adherence to antenatal care and ART. We will also examine a set of follow-up infant birth outcomes (APGAR score, preterm delivery, mortality (at < 16 weeks), birth weight, vaccination record, and HIV status). Discussion: Our trial will evaluate MME, a culturally based HIV stigma reduction intervention using the "What Matters Most"framework, to reduce stigma and improve treatment adherence among pregnant women and their infants. This study will help inform further refinement of MME and preparation for a future large-scale, multisite, randomized controlled trial (RCT) in Botswana. Trial registration: ClinicalTrials.gov NCT03698981. Registered on October 8, 2018

Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for Biobanks

Hong, S. J., Drake, B., Goodman, M., & Kaphingst, K. A.

Publication year

2020

Journal title

Health Communication

Volume

35

Issue

10

Page(s)

1219-1228
Abstract
Abstract
This study investigates how patients’ privacy concerns about research uses of biospecimen and trust in doctors are associated with their preferences for informed consent and need for control over biospecimens in a biobank. Particularly, this study focuses on the perspectives of Communication Privacy Management theory, precision medicine, and racial health disparities. We recruited 358 women aged 40 and older stratified by race (56% African American and 44% European American). Multivariable linear regression models examined hypothesis and research questions. Individuals’ privacy concerns and trust in doctors were significantly associated with their need for control. Although participants’ privacy concerns were positively associated with their preference for study-specific model, trust in doctors had no effect on the preference. African American participants needed more control over their sample and were more likely to prefer study-specific model compared to European American participants. Significant interactions by race on the associations between trust and need for control and between privacy concerns and preference for study-specific model were found. These findings suggest that when developing large diverse biobanks for future studies it is important to consider privacy concerns, trust, and need for control with an understanding that there are differences in preferences by race.

Racial Discrimination, Sexual Partner Race/Ethnicity, and Depressive Symptoms Among Black Sexual Minority Men

English, D., Hickson, D. M. A., Callander, D., Goodman, M. S., & Duncan, D. T.

Publication year

2020

Journal title

Archives of Sexual Behavior

Volume

49

Issue

5

Page(s)

1799-1809
Abstract
Abstract
Although racial sexual exclusivity among Black gay, bisexual, and other sexual minority men (SMM) is frequently framed as a cause of HIV inequities, little research has examined how these sexual relationships may be driven by and protective against racism. This study examined associations between general racial discrimination, Black sexual exclusivity, sexual racial discrimination, and depressive symptoms among Black SMM. We conducted analyses on cross-sectional self-report data from 312 cisgender Black SMM in the U.S. Deep South who participated in the MARI study. Measures included general racial and sexual identity discrimination, race/ethnicity of sexual partners, sexual racial discrimination, and depressive symptoms. We estimated a moderated-mediation model with associations from discrimination to Black sexual exclusivity, moderated by discrimination target, from Black sexual exclusivity to sexual racial discrimination, and from sexual racial discrimination to depressive symptoms. We tested an indirect effect from racial discrimination to depressive symptoms to examine whether Black sexual exclusivity functioned as an intervening variable in the associations between racial discrimination and depressive symptoms. Results indicated that participants who experienced racial discrimination were more likely to exclusively have sex with Black men. Men with higher Black sexual exclusivity were less likely to experience sexual racial discrimination and, in turn, reported lower depressive symptoms. The indirect pathway from racial discrimination to depressive symptoms through Black sexual exclusivity and sexual racial discrimination was significant. Our results suggest that one of the drivers of sexual exclusivity among Black SMM may be that it helps to protect against the caustic psychological effects of racial discrimination.

Racial/Ethnic Diversity in Academic Public Health: 20-Year Update

Goodman, M. S., Plepys, C. M., Bather, J. R., Kelliher, R. M., & Healton, C. G.

Publication year

2020

Journal title

Public Health Reports

Volume

135

Issue

1

Page(s)

74-81
Abstract
Abstract
Objective: This study is a follow-up to an examination of the racial/ethnic composition of public health students (1996) and faculty (1997) at schools of public health that was conducted 20 years ago. We examined data on the race/ethnicity of students, graduates, and faculty among Association of Schools and Programs of Public Health (ASPPH)–member institutions during 2016-2017 and how these data have changed in the past 20 years. Methods: We obtained data on the race/ethnicity of students (in 1996 and 2016), graduates (in 1996 and 2016), and faculty (in 1997 and 2017) at ASPPH-member institutions from the ASPPH Data Center. We tabulated frequencies, percentages, and 20-year percentage-point changes by race/ethnicity. We examined data for all current ASPPH-member institutions and for comparable subcohorts of 1996 and 1997 member institutions that are current ASPPH members. Results: In graduate student enrollment, the 20-year increase in each nonwhite racial/ethnic subgroup was ≤5 percentage points. Among tenured faculty, the 20-year increase was greatest among Asians (8 percentage points) but was <3 percentage points for black, Hispanic, and Native American faculty. Conclusions: The increasing racial/ethnic diversity among students, graduates, and faculty in schools and programs of public health contributes to parallel increases in racial/ethnic diversity in the public health workforce. Schools and programs of public health should recruit clusters of racial/ethnic minority students using holistic application review processes, provide enrolled students with racially/ethnically diverse role models and mentors, and dedicate staffing to ensure a student-centered approach. In addition, those who mentor racially/ethnically diverse students and junior faculty should be rewarded.

Reaching consensus on principles of stakeholder engagement in research

Relationships of Family History-related Factors and Causal Beliefs to Cancer Risk Perception and Mammography Screening Adherence Among Medically Underserved Women

Hong, S. J., Goodman, M., & Kaphingst, K. A.

Publication year

2020

Journal title

Journal of Health Communication

Page(s)

531-542
Abstract
Abstract
This study examines how family history-related factors and causal beliefs affect underserved women’s cancer risk perceptions and adherence to mammography. 1,010 patients at a primary care safety net clinic at a large urban hospital completed a survey in 2015. Of the 1,010 patients, 467 women 45 years of age or older were included in this analysis. The majority of participants were African American (68%). We built multivariable linear and logistic regression models to examine the dependent variables of cancer risk perception and mammography screening adherence. According to the results, those with a family history of cancer were significantly more likely to be adherent to mammography. Perceived importance of family health history also significantly predicted their mammography screening adherence. However, cancer risk perceptions did not predict underserved women’s mammography adherence. Significant interaction effects on the associations 1) between family cancer history, cancer risk perceptions, and mammography screening adherence and 2) between race, behavioral causal beliefs, and risk perceptions were found. Findings suggest that implementing different strategies across racial groups and by cancer history may be necessary to promote regular mammography screening.

Relationships of health information orientation and cancer history on preferences for consent and control over biospecimens in a biobank: A race-stratified analysis

Hong, S. J., Drake, B., Goodman, M., & Kaphingst, K. A.

Publication year

2020

Journal title

Journal of Genetic Counseling

Volume

29

Issue

3

Page(s)

479-490
Abstract
Abstract
In this study, we investigated how patients’ self-reported health information efficacy, relationship with health providers, and cancer history are associated with their preferences for informed consent and need for control over biobank biospecimens. We recruited 358 women aged 40 and older (56% African American; 44% European American) and analyzed the data using multivariable regression models. Results show that African American participants’ health information efficacy was significantly and negatively associated with their need for control over biospecimens and preference for a study-specific model. European American participants’ dependency on doctors was a significant and negative predictor of their preference for a study-specific model. Several significant interaction effects, which varied across races, were found with regard to health information efficacy, personal cancer history, need for control, and preference for a study-specific model. The study findings suggest it is important to consider health information efficacy, relationship with providers, and need for control when developing large diverse biobanks.

Comparing preferences for return of genome sequencing results assessed with rating and ranking items

Guo, S., Goodman, M., & Kaphingst, K.

Publication year

2019

Journal title

Journal of Genetic Counseling

Volume

29

Issue

1

Page(s)

131-134

Comparison of unintended pregnancy at 12 months between two contraceptive care programs; a controlled time-trend design

Content validation of a quantitative stakeholder engagement measure

Decision role preferences for return of results from genome sequencing amongst young breast cancer patients

Effect of staff training and cost support on provision of long-acting reversible contraception in community health centers

Factors affecting breast cancer patients' need for genetic risk information: From information insufficiency to information need

How neighborhoods matter in fatal interactions between police and men of color

Adaptation, Implementation, and Evaluation of a Public Health Research Methods Training for Youth

Goodman, M. S., Gbaje, E., Yassin, S. M., Johnson DIas, J., Gilbert, K., & Thompson, V.

Publication year

2018

Journal title

Health Equity

Volume

2

Issue

1

Page(s)

349-355
Abstract
Abstract
Purpose: 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

Rains, C. M., Todd, G., Kozma, N., & Goodman, M. S.

Publication year

2018

Journal title

Journal of Public Health Management and Practice

Volume

24

Issue

4

Page(s)

335-339
Abstract
Abstract
Context: 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

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.

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.

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.

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.

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.

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.

Contact

melody.goodman@nyu.edu 715/719 Broadway 10th Floor New York, NY 10003