Associate Dean for Research
Associate Professor of Biostatistics
Dr. Melody Goodman’s efforts seek to understand the social risk factors that contribute to health disparities in urban areas, with the goal of developing culturally competent, region-specific, and evidence-based solutions through collaborative activities with community members, community-based organizations, faith-based organizations, and other community health stakeholders. The purpose of her work is the development of solutions for improving health in minority and medically underserved communities.
Dr. Goodman conducts applied biostatistical and survey research for community-based interventions and health disparities research with a strong focus on measurement. Additionally, through academic-community collaborations, she implements, evaluates, and enhances the infrastructure of community-engaged research, in order to mitigate health disparities. As such, Dr. Goodman is the Principal Investigator of a Patient-Centered Outcomes Research Institute (PCORI) grant that aims to validate and implement a quantitative survey measure to assess the level of community engagement in patient-centered outcomes research (PCOR) and clinical effectiveness research (CER) studies from the community stakeholder perspective.
Previously, Dr. Goodman has been subcontracted by the National Human Genome Research Institute/NIH to analyze patterns of beliefs about the genetic causation of health conditions and health behaviors among community health center patients. She was the Principal Investigator on a NIH Partners in Research grant entitled Community Alliance for Research Empowering Social change (CARES). With numerous funders supporting her work, she has published over 70 peer-reviewed journal articles.
BS, Economics and Applied Mathematics & Statistics, State University of New York at Stony Brook, Stony Brook, NYMS, Biostatistics, Harvard University, Cambridge, MAPhD, Biostatistics (Minors: Social Determinants of Health Disparities and Theoretical Statistics), Harvard University, Cambridge, MA
Siteman Cancer Center “Rock Doc” (2013)Satcher Health Leadership Institute - Morehouse School of Medicine, Community Health Leadership Institute Intensive Cohort II (2013)Women of the Year - Health, National Coalition of 100 Black Women, Inc. - Suffolk Chapter (2010)President’s Award for Teaching Excellence - Stony Brook University (2009)President’s Award for Excellence in Team Achievement - Stony Brook University (2008)
BiostatisticsCommunity HealthCommunity-based Participatory ResearchDissemination and Implementation of Evidence-based ProgramsHealth DisparitiesHealth EquityMinoritiesMinority HealthQuantitative Research
Impact of education on APOL1 testing attitudes among prospective living kidney donorsNestor, J. G., Li, A. J., King, K. L., Husain, S. A., McIntosh, T. J., Sawinski, D., Iltis, A. S., Goodman, M. S., Walsh, H. A., DuBois, J. M., & Mohan, S.
Journal titleClinical Transplantation
Issue1AbstractIt is unknown how providing prospective living donors with information about APOL1, including the benefits and drawbacks of testing, influences their desire for testing. In this study, we surveyed 102 participants with self-reported African ancestry and positive family history of kidney disease, recruited from our nephrology waiting room. We assessed views on APOL1 testing before and after presentation of a set of potential benefits and drawbacks of testing and quantified the self-reported level of influence individual benefits and drawbacks had on participants’ desire for testing in the proposed context of living donation. The majority of participants (92%) were aware of organ donation and more than half (56%) had considered living donation. And though we found no significant change in response following presentation of the potential benefits and the drawbacks of APOL1 testing by study end significance, across all participants, “becoming aware of the potential risk of kidney disease among your immediate family” was the benefit with the highest mean influence (3.3±1.4), while the drawback with the highest mean influence (2.9±1.5) was “some transplant centers may not allow you to donate to a loved one”. This study provides insights into the priorities of prospective living donors and suggests concern for how the information affects family members may strongly influence desires for testing. It also highlights the need for greater community engagement to gain a deeper understanding of the priorities that influence decision making on APOL1 testing.
Acculturation and Depressive Symptoms Among Dominicans in New York CityHagen, D., Goldmann, E., Parikh, N., Goodman, M., & Boden-Albala, B.
Journal titleJournal of Immigrant and Minority HealthAbstractLittle is known about the association between acculturation and mental health among Dominican populations in the United States. Data came from a community survey of Dominican residents of New York City (n = 2744). Associations between two indicators of acculturation, proportion of life spent in the U.S. and interview language (English/Spanish), with lifetime depressive symptoms (Patient Health Questionnaire-9 score ≥ 5) were examined using logistic regression overall and by gender. In adjusted models, respondents with English-language interview and above-median proportion of life spent in the U.S. had 77% higher odds (95% CI 1.28, 2.44) of lifetime depressive symptoms than those with Spanish-language interview and below-median proportion of life spent in the U.S. There was some evidence of elevated odds of depressive symptoms among men with English-language interview and below-median proportion of life spent in the U.S. Additional research is needed to elucidate gender-specific impacts of acculturation on mental health in this population.
Comparing models of delivery for cancer genetics services among patients receiving primary care who meet criteria for genetic evaluation in two healthcare systems: BRIDGE randomized controlled trialFailed generating bibliography.Abstract
Journal titleBMC health services research
Issue1AbstractBackground: Advances in genetics and sequencing technologies are enabling the identification of more individuals with inherited cancer susceptibility who could benefit from tailored screening and prevention recommendations. While cancer family history information is used in primary care settings to identify unaffected patients who could benefit from a cancer genetics evaluation, this information is underutilized. System-level population health management strategies are needed to assist health care systems in identifying patients who may benefit from genetic services. In addition, because of the limited number of trained genetics specialists and increasing patient volume, the development of innovative and sustainable approaches to delivering cancer genetic services is essential. Methods: We are conducting a randomized controlled trial, entitled Broadening the Reach, Impact, and Delivery of Genetic Services (BRIDGE), to address these needs. The trial is comparing uptake of genetic counseling, uptake of genetic testing, and patient adherence to management recommendations for automated, patient-directed versus enhanced standard of care cancer genetics services delivery models. An algorithm-based system that utilizes structured cancer family history data available in the electronic health record (EHR) is used to identify unaffected patients who receive primary care at the study sites and meet current guidelines for cancer genetic testing. We are enrolling eligible patients at two healthcare systems (University of Utah Health and New York University Langone Health) through outreach to a randomly selected sample of 2780 eligible patients in the two sites, with 1:1 randomization to the genetic services delivery arms within sites. Study outcomes are assessed through genetics clinic records, EHR, and two follow-up questionnaires at 4 weeks and 12 months after last genetic counseling contactpre-test genetic counseling. Discussion: BRIDGE is being conducted in two healthcare systems with different clinical structures and patient populations. Innovative aspects of the trial include a randomized comparison of a chatbot-based genetic services delivery model to standard of care, as well as identification of at-risk individuals through a sustainable EHR-based system. The findings from the BRIDGE trial will advance the state of the science in identification of unaffected patients with inherited cancer susceptibility and delivery of genetic services to those patients. Trial registration: BRIDGE is registered as NCT03985852. The trial was registered on June 6, 2019 at clinicaltrials.gov.
Development and validation of a brief version of the research engagement survey toolGoodman, M. S., Ackermann, N., Pierce, K. A., Bowen, D. J., & Thompson, V. S.
Journal titleInternational journal of environmental research and public health
Issue19AbstractThe Research Engagement Survey Tool (REST) examines the level of partner engagement in research studies. This study used mixed methods, including web‐based surveys (N = 336), a mod-ified Delphi process (N = 18), and cognitive response interviews (N = 16), with convenience sampling to develop and validate a short version of the REST. We conducted factor analysis and calculated internal consistency for the condensed REST. We validated the condensed REST against the comprehensive REST. All analyses were carried out on two scales (quality and quantity) based on Likert-type response options. We examined convergent validity with other measures theoretically associ-ated with the REST (e.g., the Community Engagement Research Index and the Partnership Self‐ Assessment Tool). This study produced a 9‐item condensed version of the REST. The condensed REST loads on 1 factor, has high internal consistency (Cronbach’s alpha = 0.92 for the quantity scale; 0.94 for the quality scale), is significantly correlated (ρ = 0.97; p < 0.001 for both scales) with the comprehensive (32‐item) REST, and has negligible, low, and moderate correlation with other measures (e.g., the Partnership Assessment In community‐based Research, trust in medical re-searchers, and the Coalition Self‐Assessment Survey). Use of the condensed REST will reduce par-ticipant burden and time to complete. This standardized and validated quantitative measure is useful to compare engagement across projects or within a project over time.
Impact of numeracy preferences on information needs for genome sequencing resultsAlbrechtsen, R. D., Goodman, M. S., Bather, J. R., & Kaphingst, K. A.
Journal titlePatient Education and Counseling
Page(s)467-472AbstractObjective: This study investigated how self-reported numeracy ability and preferences predict preferences for the amount and types of information provided about genome sequencing results among 1080 women diagnosed with breast cancer at age 40 or younger. Methods: Participants reported their level of interest in 14 topics related to genome sequencing results on a survey. We calculated a Participant Information Needs (PIN) value based on the number of topics for which a participant wanted “a lot” of information. Numeracy was assessed using the Subjective Numeracy Scale. Analyses examined associations between the numeracy ability and preferences subscales, information needs for individual content topics, and PIN. Results: Higher preference for numeric data was correlated with increased PIN (β = 0.60, p < 0.01), while numeric ability was not correlated (β=0.16, p = 0.22). Family composition and knowledge about sequencing benefits were also significant covariates. Patients most preferred information on topics related to disease risk and health implications. Conclusion: There may be utility in separating numeracy ability and preferences into two components in future research in order to investigate how numeracy impacts the return of genetic testing results. Practice Implications: These data suggest that numeracy preferences may be important to inform strategies for the return of genetic results.
Perceived barriers to assessing understanding and appreciation of informed consent in clinical trials: A mixed-method studySolomon, E. D., Mozersky, J., Baldwin, K., Wroblewski, M. P., Parsons, M. V., Goodman, M., & Dubois, J. M.
Journal titleJournal of Clinical and Translational Science
Issue1AbstractIntroduction: Participants and research professionals often overestimate how well participants understand and appreciate consent information for clinical trials, and experts often vary in their determinations of participant's capacity to consent to research. Past research has developed and validated instruments designed to assess participant understanding and appreciation, but the frequency with which they are utilized is unknown. Methods: We administered a survey to clinical researchers working with older adults or those at risk of cognitive impairment (N = 1284), supplemented by qualitative interviews (N = 60). Results: We found that using a validated assessment of consent is relatively uncommon, being used by only 44% of researchers who had an opportunity. Factors that predicted adoption of validated assessments included not seeing the study sponsor as a barrier, positive attitudes toward assessments, and being confident that they had the resources needed to implement an assessment. The perceived barriers to adopting validated assessments of consent included lack of awareness, lack of knowledge, being unsure of how to administer such an assessment, and the burden associated with implementing this practice. Conclusions: Increasing the use of validated assessments of consent will require educating researchers on the practice and emphasizing very practical assessments, and may require Institutional Review Boards (IRBs) or study sponsors to champion the use of assessments.
Psychometric Validation of a Scale to Assess Culturally-Salient Aspects of HIV Stigma Among Women Living with HIV in Botswana: Engaging “What Matters Most” to Resist StigmaYang, L. H., Ho-Foster, A. R., Becker, T. D., Misra, S., Rampa, S., Poku, O. B., Entaile, P., Goodman, M., & Blank, M. B.
Journal titleAIDS and Behavior
Page(s)459-474AbstractPerceived stigma deters engagement in HIV care and is powerfully shaped by culture. Yet few stigma measures consider how cultural capabilities that signify “full personhood” could be engaged to resist stigma. By applying a theory conceptualizing how culturally-salient mechanisms can worsen or mitigate HIV stigma in relation to “what matters most” (WMM), we developed the WMM Cultural Stigma Scale for Women Living with HIV in Botswana (WMM-WLHIV-BW) and psychometrically evaluated it among 201 respondents with known and unknown HIV status. The two subscales, Cultural Factors Shape Stigma (CFSS) and Cultural Capabilities Protect against Stigma (CCPS) were reliable (both α= 0.90). Among WLHIV, the CFSS Subscale showed initial construct validity with depressive symptoms (r =.39, p =.005), similar to an established HIV stigma scale, whereas the CCPS Subscale showed initial construct validity with self-esteem (r =.32, p =.026) and social support number (r =.29, p =.047), suggesting that achieving local cultural capabilities mitigates stigma and is linked with positive psychosocial outcomes. This culturally-derived scale could help WLHIV in Botswana experience improved stigma-related outcomes.
Racial Disparities in Breast Reconstruction at a Comprehensive Cancer CenterConnors, S. K., Goodman, M. S., Myckatyn, T., Margenthaler, J., & Gehlert, S.
Journal titleJournal of Racial and Ethnic Health DisparitiesAbstractIntroduction: Breast reconstruction after a mastectomy is an important component of breast cancer care that improves the quality of life in breast cancer survivors. African American women are less likely to receive breast reconstruction than Caucasian women. The purpose of this study was to further investigate the reconstruction disparities we previously reported at a comprehensive cancer center by assessing breast reconstruction rates, patterns, and predictors by race. Methods: Data were obtained from women treated with definitive mastectomy between 2000 and 2012. Sociodemographic, tumor, and treatment characteristics were compared between African American and Caucasian women, and logistic regression was used to identify significant predictors of reconstruction by race. Results: African American women had significantly larger proportions of public insurance, aggressive tumors, unilateral mastectomies, and modified radical mastectomies. African American women had a significantly lower reconstruction rate (35% vs. 49%, p < 0.01) and received a larger proportion of autologous reconstruction (13% vs. 7%, p < 0.01) compared to Caucasian women. The receipt of adjuvant radiation therapy was a significant predictor of breast reconstruction in Caucasian but not African American women. Conclusions: We identified breast reconstruction disparities in rate and type of reconstruction. These disparities may be due to racial differences in sociodemographic, tumor, and treatment characteristics. The predictors of breast reconstruction varied by race, suggesting that the mechanisms underlying breast reconstruction may vary in African American women. Future research should take a target approach to examine the relative contributions of sociodemographic, tumor, and treatment determinants of the breast reconstruction disparities in African American women.
Strategies of community engagement in research: Definitions and classificationsThompson, V. L., Ackermann, N., Bauer, K. L., Bowen, D. J., & Goodman, M. S.
Journal titleTranslational Behavioral Medicine
Page(s)441-451AbstractEngagement activities are defined along a continuum that analyzes and represents nonacademic stakeholder activities and interactions with academic researchers. Proposed continua begin with none to limited stakeholder inclusion and input into research and continue with descriptions of increasing presence, input, and participation in decision-making. Despite some agreement in the literature, development of consistent terminology and definitions has been recommended to promote the common understanding of strategies in engaged research. This paper sought to develop and understand classifications and definitions of community-engaged research that can serve as the foundation of a measure of engaged research that permits comparisons among engagement strategies and the outcomes that they produce in health-and healthcare-related research studies. Data on academic and stakeholder perceptions and understandings of classifications and definitions were obtained using Delphi process (N = 19) via online and face-to-face survey and cognitive response interviews (N = 16). Participants suggested the need for more nuanced understanding of engagement along portions of the continuum, with active involvement and decision-making as engagement progressed. Cognitive interview responses suggested that outreach and education is a more advanced level of engagement than previously discussed in the literature and viewed consultation negatively because it required work without guaranteeing community benefit. It is possible to define a continuum of patient-and community-engaged research that is understood and accepted by both academic researchers and community members. However, future research should revisit the understanding and depiction of the strategies that are to be used in measure development.
Understanding the Use of Optimal Formatting and Plain Language When Presenting Key Information in Clinical TrialsSolomon, E. D., Mozersky, J., Wroblewski, M. P., Baldwin, K., Parsons, M. V., Goodman, M., & DuBois, J. M.
Journal titleJournal of Empirical Research on Human Research Ethics
Page(s)177-192AbstractRecent revisions to the Common Rule require that consent documents begin with a focused presentation of the study's key information that is organized to facilitate understanding. We surveyed 1,284 researchers working with older adults or individuals with Alzheimer's disease, supplemented with 60 qualitative interviews, to understand current use and barriers to using evidence-based formatting and plain language in key information. Researchers reported using formatting in 42% of their key information sections, and plain language in 63% of their key information sections. Perceived barriers included lack of knowledge, Institutional Review Board, other members of their team, and the burden associated with implementation. Education and training are required to increase adoption of the practices.
Community partners' responses to items assessing stakeholder engagement: Cognitive response testing in measure developmentThompson, V. L., Leahy, N., Ackermann, N., Bowen, D. J., & Goodman, M. S.
Journal titlePloS one
Issue11AbstractBackground Despite recognition of the importance of stakeholder input into research, there is a lack of validated measures to assess how well constituencies are engaged and their input integrated into research design. Measurement theory suggests that a community engagement measure should use clear and simple language and capture important components of underlying constructs, resulting in a valid measure that is accessible to a broad audience. Objective The primary objective of this study was to evaluate how community members understood and responded to a measure of community engagement developed to be reliable, valid, easily administered, and broadly usable. Method Cognitive response interviews were completed, during which participants described their reactions to items and how they processed them. Participants were asked to interpret item meaning, paraphrase items, and identify difficult or problematic terms and phrases, as well as provide any concerns with response options while responding to 16 of 32 survey items. Results The results of the cognitive response interviews of participants (N = 16) suggest concerns about plain language and literacy, clarity of question focus, and the lack of context clues to facilitate processing in response to items querying research experience. Minimal concerns were related to response options. Participants suggested changes in words and terms, as well as item structure. Conclusion Qualitative research can improve the validity and accessibility of measures that assess stakeholder experience of community-engaged research. The findings suggest wording and sentence structure changes that improve ability to assess implementation of community engagement and its impact on research outcomes.
Mothers moving towards empowerment' intervention to reduce stigma and improve treatment adherence in pregnant women living with HIV in Botswana: Study protocol for a pragmatic clinical trialPoku, 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.
Issue1AbstractBackground: 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 BiobanksHong, S. J., Drake, B., Goodman, M., & Kaphingst, K. A.
Journal titleHealth Communication
Page(s)1219-1228AbstractThis study investigates how patients’ privacy concerns about research uses of biospecimen and trust in doctors are associated with their preferences for informed consent and need for control over biospecimens in a biobank. Particularly, this study focuses on the perspectives of Communication Privacy Management theory, precision medicine, and racial health disparities. We recruited 358 women aged 40 and older stratified by race (56% African American and 44% European American). Multivariable linear regression models examined hypothesis and research questions. Individuals’ privacy concerns and trust in doctors were significantly associated with their need for control. Although participants’ privacy concerns were positively associated with their preference for study-specific model, trust in doctors had no effect on the preference. African American participants needed more control over their sample and were more likely to prefer study-specific model compared to European American participants. Significant interactions by race on the associations between trust and need for control and between privacy concerns and preference for study-specific model were found. These findings suggest that when developing large diverse biobanks for future studies it is important to consider privacy concerns, trust, and need for control with an understanding that there are differences in preferences by race.
Racial Discrimination, Sexual Partner Race/Ethnicity, and Depressive Symptoms Among Black Sexual Minority MenEnglish, D., Hickson, D. M. A., Callander, D., Goodman, M. S., & Duncan, D. T.
Journal titleArchives of Sexual Behavior
Page(s)1799-1809AbstractAlthough racial sexual exclusivity among Black gay, bisexual, and other sexual minority men (SMM) is frequently framed as a cause of HIV inequities, little research has examined how these sexual relationships may be driven by and protective against racism. This study examined associations between general racial discrimination, Black sexual exclusivity, sexual racial discrimination, and depressive symptoms among Black SMM. We conducted analyses on cross-sectional self-report data from 312 cisgender Black SMM in the U.S. Deep South who participated in the MARI study. Measures included general racial and sexual identity discrimination, race/ethnicity of sexual partners, sexual racial discrimination, and depressive symptoms. We estimated a moderated-mediation model with associations from discrimination to Black sexual exclusivity, moderated by discrimination target, from Black sexual exclusivity to sexual racial discrimination, and from sexual racial discrimination to depressive symptoms. We tested an indirect effect from racial discrimination to depressive symptoms to examine whether Black sexual exclusivity functioned as an intervening variable in the associations between racial discrimination and depressive symptoms. Results indicated that participants who experienced racial discrimination were more likely to exclusively have sex with Black men. Men with higher Black sexual exclusivity were less likely to experience sexual racial discrimination and, in turn, reported lower depressive symptoms. The indirect pathway from racial discrimination to depressive symptoms through Black sexual exclusivity and sexual racial discrimination was significant. Our results suggest that one of the drivers of sexual exclusivity among Black SMM may be that it helps to protect against the caustic psychological effects of racial discrimination.
Racial/Ethnic Diversity in Academic Public Health: 20-Year UpdateGoodman, M. S., Plepys, C. M., Bather, J. R., Kelliher, R. M., & Healton, C. G.
Journal titlePublic Health Reports
Page(s)74-81AbstractObjective: 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 researchFailed generating bibliography.Abstract
Journal titleProgress in Community Health Partnerships: Research, Education, and Action
Page(s)117-127AbstractBackground: Stakeholder-engaged research is an umbrella term for the types of research that have community, patient, and/or stakeholder engagement, feedback, and bidirectional communication as approaches used in the research process. The level of stakeholder engagement across studies can vary greatly, from minimal engagement to fully collaborative partnerships. Objectives: To present the process of reaching consensus among stakeholder and academic experts on the stakeholder engagement principles (EPs) and to identify definitions for each principle. Methods: We convened 19 national experts, 18 of whom remained engaged in a five-round Delphi process. The Delphi panel consisted of a broad range of stakeholders (e.g., patients, caregivers, advocacy groups, clinicians, researchers). We used web-based surveys for most rounds (1–3 and 5) and an in-person meeting for round 4. Panelists evaluated EP titles and definitions with a goal of reaching consensus (>80% agreement). Panelists’ comments guided modifications, with greater weight given to non-academic stakeholder input. Conclusions: EP titles and definitions were modified over five Delphi rounds. The panel reached consensus on eight EPs (dropping four, modifying four, and adding one) and corresponding definitions. The Delphi process allowed for a stakeholder-engaged approach to methodological research. Stakeholder engagement in research is time consuming and requires greater effort but may yield a better, more relevant outcome than more traditional scientist-only processes. This stakeholder-engaged process of reaching consensus on EPs and definitions provides a key initial step for the content validation of a survey tool to examine the level of stakeholder engagement in research studies.
Relationships of Family History-related Factors and Causal Beliefs to Cancer Risk Perception and Mammography Screening Adherence Among Medically Underserved WomenHong, S. J., Goodman, M., & Kaphingst, K. A.
Journal titleJournal of Health Communication
Page(s)531-542AbstractThis 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 analysisHong, S. J., Drake, B., Goodman, M., & Kaphingst, K. A.
Journal titleJournal of Genetic Counseling
Page(s)479-490AbstractIn 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 itemsGuo, S., Goodman, M., & Kaphingst, K.
Journal titleJournal of Genetic Counseling
Comparison of unintended pregnancy at 12 months between two contraceptive care programs; a controlled time-trend designMadden, T., Paul, R., Maddipati, R., Buckel, C., Goodman, M., & Peipert, J. F.
Page(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 measureGoodman, M. S., Ackermann, N., Bowen, D. J., & Thompson, V.
Journal titleJournal of Community Psychology
Page(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 patientsMatsen, C. B., Lyons, S., Goodman, M. S., Biesecker, B. B., & Kaphingst, K. A.
Journal titlePatient Education and Counseling
Page(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 centersBuckel, C., Maddipati, R., Goodman, M., Peipert, J. F., & Madden, T.
Page(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 (p<0.01). Among women who chose LARC (n=426), those in “Complete CHOICE” were more likely to receive a same-day insertion, 53.8% vs. 13.7% (RR adj 4.73; 95%CI 3.20–6.98) compared to “Enhanced Care.” Conclusions: A contraceptive care model that included healthcare provider education and cost support for LARC in addition to structured contraceptive counseling resulted in higher rates of same-day LARC insertion compared to contraceptive counseling and usual care alone. Implications: Contraceptive care provision which includes contraceptive counseling, healthcare provider education, and “on-the-shelf” long-acting reversible contraception facilitate same-day initiation of these methods. Interventions that focus solely on contraceptive counseling do not address other structural barriers to same-day contraceptive provision of all methods including cost and provider practice.
Factors affecting breast cancer patients' need for genetic risk information: From information insufficiency to information needHong, S. J., Biesecker, B., Ivanovich, J., Goodman, M., & Kaphingst, K. A.
Journal titleJournal of Genetic Counseling
Page(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 colorJohnson, O., St. Vil, C., Gilbert, K. L., Goodman, M., & Johnson, C. A.
Journal titleSocial Science and Medicine
Page(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.