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

A Study Examining the Usefulness of a New Measure of Research Engagement

Bowen, D. J., Ackermann, N., Thompson, V. S., Nederveld, A., & Goodman, M.

Publication year

2022

Journal title

Journal of general internal medicine

Volume

37

Page(s)

50-56

10.1007/s11606-021-06993-1

Abstract

Abstract

Introduction: Engagement of relevant stakeholders’ ideas, opinions, and concerns is critical to the success of modern research projects. We have developed a tool to measure stakeholder engagement, called the Research Engagement Survey Tool (REST). The purpose of this paper is to present the implementation and uptake of the stakeholder engagement measure REST among research teams, including the assessment of barriers and facilitating factors for use of the new research engagement measure in practice. Methods: In this implementation study, project team members participated in baseline and follow-up web-based surveys. Web-based interviews were conducted with a subset of project teams that implemented the REST. On the baseline survey, project teams were asked to provide details about up to three ongoing or recently completed projects, were asked if they agreed with compensation for REST completion, and were asked if they would like to send the survey to stakeholders or would prefer our project team to email their project stakeholders. Follow-up surveys contained questions on reactions to implementing REST and results of REST. Results: Project team members/researchers who completed the baseline survey (n=86) were mostly female (79%) and Non-Hispanic/Latino(a) White (76%). Those who implemented REST were also mostly female (86%) and Non-Hispanic/Latino(a) White (71%), with an average of 11 years in academic research. About 98% of all participants completing the baseline survey had the capacity to survey partners, while 100% of all teams who implemented REST did. A small portion of respondents indicated the time commitment of REST would be a barrier (29% of baseline survey respondents, 10% of those who implemented REST) and indicated workload would be a barrier (31% of baseline survey respondents, 14% of those who implemented REST). Discussion: The data presented here indicate that REST implementation is feasible in a volunteer group of ongoing research projects.

Copycat and lookalike edible cannabis product packaging in the United States

Ompad, D. C., Snyder, K. M., Sandh, S., Hagen, D., Collier, K. J., Goldmann, E., Goodman, M. S., & Tan, A. S.

Publication year

2022

Journal title

Drug and alcohol dependence

Volume

235

10.1016/j.drugalcdep.2022.109409

Abstract

Abstract

Background: Recent media reports have highlighted copycat/lookalike cannabis edibles as a public health concern. No empirical papers have described this phenomenon. Methods: From May 2020-August 2021, we collected photos of cannabis products via an online survey of cannabis users and through personal contacts. Copycat/lookalike products are defined as those that use the same or similar brand name, logo, and/or imagery as an existing commercial non-cannabis counterpart (CNCC). We assessed each package for similarities with its CNCC with respect to brand name, product name, font, color, flavors, and brand/promotional characters. We examined cannabis content indicators including: THC content per package and serving, cannabis leaf symbol, product warnings, cannabis terms, cannabis motifs, activation time, and guidance on edible use. Results: We collected photos of 731 cannabis products; 267 (36%) were edibles of which 22 (8%) represented 13 unique copycat/lookalike products. Eight used exact brand/product names as existing CNCCs, and five used similar names. Packages copied or imitated a mean of 3.9 of six features and indicated cannabis content with a mean of 4.1 of eight features. Thirteen packages indicated a mean THC content of 459 mg/package. Four reported THC dose per serving, with a mean dose of 47.5 mg. Conclusions: Our content analysis highlights three key concerns. First, copycat/lookalike edibles subtly indicate cannabis content while using high fidelity replication or imitation of their CNCC. Second, THC content is high and there were multiple 10 mg THC doses in the equivalent of 1 serving of a CNCC. Third, these products may be attractive to children.

GARDE: A standards-based clinical decision support platform for identifying population health management cohorts

Bradshaw, R. L., Kawamoto, K., Kaphingst, K. A., Kohlmann, W. K., Hess, R., Flynn, M. C., Nanjo, C. J., Warner, P. B., Shi, J., Morgan, K., Kimball, K., Ranade-Kharkar, P., Ginsburg, O., Goodman, M., Chambers, R., Mann, D., Narus, S. P., Gonzalez, J., Loomis, S., Chan, P., Monahan, R., Borsato, E. P., Shields, D. E., Martin, D. K., Kessler, C. M., & Del Fiol, G.

Publication year

2022

Journal title

Journal of the American Medical Informatics Association

Volume

29

Issue

5

Page(s)

928-936

10.1093/jamia/ocac028

Abstract

Abstract

Population health management (PHM) is an important approach to promote wellness and deliver health care to targeted individuals who meet criteria for preventive measures or treatment. A critical component for any PHM program is a data analytics platform that can target those eligible individuals. Objective: The aim of this study was to design and implement a scalable standards-based clinical decision support (CDS) approach to identify patient cohorts for PHM and maximize opportunities for multi-site dissemination. Materials and Methods: An architecture was established to support bidirectional data exchanges between heterogeneous electronic health record (EHR) data sources, PHM systems, and CDS components. HL7 Fast Healthcare Interoperability Resources and CDS Hooks were used to facilitate interoperability and dissemination. The approach was validated by deploying the platform at multiple sites to identify patients who meet the criteria for genetic evaluation of familial cancer. Results: The Genetic Cancer Risk Detector (GARDE) platform was created and is comprised of four components: (1) an open-source CDS Hooks server for computing patient eligibility for PHM cohorts, (2) an open-source Population Coordinator that processes GARDE requests and communicates results to a PHM system, (3) an EHR Patient Data Repository, and (4) EHR PHM Tools to manage patients and perform outreach functions. Site-specific deployments were performed on onsite virtual machines and cloud-based Amazon Web Services. Discussion: GARDE's component architecture establishes generalizable standards-based methods for computing PHM cohorts. Replicating deployments using one of the established deployment methods requires minimal local customization. Most of the deployment effort was related to obtaining site-specific information technology governance approvals.

Impact of education on APOL1 testing attitudes among prospective living kidney donors

Nestor, 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.

Publication year

2022

Journal title

Clinical Transplantation

Volume

36

Issue

1

10.1111/ctr.14516

Abstract

Abstract

It is unknown how providing prospective living donors with information about APOL1, including the benefits and drawbacks of testing, influences their desire for testing. In this study, we surveyed 102 participants with self-reported African ancestry and positive family history of kidney disease, recruited from our nephrology waiting room. We assessed views on APOL1 testing before and after presentation of a set of potential benefits and drawbacks of testing and quantified the self-reported level of influence individual benefits and drawbacks had on participants’ desire for testing in the proposed context of living donation. The majority of participants (92%) were aware of organ donation and more than half (56%) had considered living donation. And though we found no significant change in response following presentation of the potential benefits and the drawbacks of APOL1 testing by study end significance, across all participants, “becoming aware of the potential risk of kidney disease among your immediate family” was the benefit with the highest mean influence (3.3±1.4), while the drawback with the highest mean influence (2.9±1.5) was “some transplant centers may not allow you to donate to a loved one”. This study provides insights into the priorities of prospective living donors and suggests concern for how the information affects family members may strongly influence desires for testing. It also highlights the need for greater community engagement to gain a deeper understanding of the priorities that influence decision making on APOL1 testing.

Presence of Content Appealing to Youth on Cannabis-Infused Edibles Packaging

Tan, A. S., Weinreich, E., Padon, A., Sanchez, M., Snyder, K. M., Vasilyeva, A., Sandh, S., Goldmann, E., Goodman, M., & Ompad, D. C.

Publication year

2022

Journal title

Substance Use and Misuse

Volume

57

Issue

8

Page(s)

1215-1219

10.1080/10826084.2022.2069268

Abstract

Abstract

Background: There is a lack of consistent regulation of cannabis edibles packaging to restrict youth-appealing content in the United States. Objective: To describe content appealing to youth on U.S. cannabis-infused edibles packaging. Methods: We analyzed 256 photos of cannabis-infused edibles packaging collected from U.S. adults from 25 states, District of Columbia, and Puerto Rico between May 2020 to August 2021. We coded the presence of product knockoffs, human and non-human creatures, images indicating flavor, text indicating flavor, and the number of colors. We compared these codes across states’ legalization status (medical and non-medical cannabis, medical cannabis only, or limited cannabis legalization). Results: Overall, 15% of packages resembled product knockoffs, 23% contained human/non-human creatures, 35% contained flavor images, 91% contained flavor text, and median number of colors was 5 (range from 1 to 10+). Packages purchased in states with medical and non-medical cannabis, medical cannabis only, or limited cannabis legalization differed significantly on product knockoffs (11%, 26%, 38%, p = 0.007), human/non-human creatures (19%, 33%, 63%, p = 0.002), flavor text (93%, 81%, 100%, p = 0.046), and number of colors (median of 5, 5, and 10, p = 0.022). Conclusions: Existing laws have not adequately limited content appealing to youth on U.S. cannabis-infused edibles packaging. Robust and consistent regulations in the U.S. are needed to ensure that the packaging of such products does not contain content that appeal to youth and lead to initiation or inadvertent ingestion.

Racial and ethnic disparities in communication study enrollment for young people with cancer: A descriptive analysis of the literature

Understanding the Use of Optimal Formatting and Plain Language When Presenting Key Information in Clinical Trials

Solomon, E. D., Mozersky, J., Wroblewski, M. P., Baldwin, K., Parsons, M. V., Goodman, M., & DuBois, J. M.

Publication year

2022

Journal title

Journal of Empirical Research on Human Research Ethics

Volume

17

Issue

1

Page(s)

177-192

10.1177/15562646211037546

Abstract

Abstract

Recent 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.

Acculturation and Depressive Symptoms Among Dominicans in New York City

Hagen, D., Goldmann, E., Parikh, N. S., Goodman, M., & Boden-Albala, B.

Publication year

2021

Journal title

Journal of Immigrant and Minority Health

10.1007/s10903-021-01316-2

Abstract

Abstract

Little 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.

Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers

Mozersky, J., McIntosh, T., Walsh, H. A., Parsons, M. V., Goodman, M., & DuBois, J. M.

Publication year

2021

Journal title

PloS one

Volume

16

Issue

12

10.1371/journal.pone.0261719

Abstract

Abstract

Qualitative health data are rarely shared in the United States (U.S.). This is unfortunate because gathering qualitative data is labor and time-intensive, and data sharing enables secondary research, training, and transparency. A new U.S. federal policy mandates data sharing by 2023, and is agnostic to data type. We surveyed U.S. qualitative researchers (N = 425) on the barriers and facilitators of sharing qualitative health or sensitive research data. Most researchers (96%) have never shared qualitative data in a repository. Primary concerns were lack of participant permission to share data, data sensitivity, and breaching trust. Researcher willingness to share would increase if participants agreed and if sharing increased the societal impact of their research. Key resources to increase willingness to share were funding, guidance, and de-identification assistance. Public health and biomedical researchers were most willing to share. Qualitative researchers need to prepare for this new reality as sharing qualitative data requires unique considerations.

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 trial

Failed generating bibliography.

Publication year

2021

Journal title

BMC health services research

Volume

21

Issue

1

10.1186/s12913-021-06489-y

Abstract

Abstract

Background: 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 tool

Goodman, M. S., Ackermann, N., Pierce, K. A., Bowen, D. J., & Thompson, V. S.

Publication year

2021

Journal title

International journal of environmental research and public health

Volume

18

Issue

19

10.3390/ijerph181910020

Abstract

Abstract

The 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 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

10.1016/j.pec.2020.09.032

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.

Perceived barriers to assessing understanding and appreciation of informed consent in clinical trials: A mixed-method study

Solomon, E. D., Mozersky, J., Baldwin, K., Wroblewski, M. P., Parsons, M. V., Goodman, M., & Dubois, J. M.

Publication year

2021

Journal title

Journal of Clinical and Translational Science

Volume

5

Issue

1

10.1017/cts.2021.807

Abstract

Abstract

Introduction: 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 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

10.1007/s10461-020-03012-y

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.

Racial Disparities in Breast Reconstruction at a Comprehensive Cancer Center

Connors, S. K., Goodman, M. S., Myckatyn, T., Margenthaler, J., & Gehlert, S.

Publication year

2021

Journal title

Journal of Racial and Ethnic Health Disparities

10.1007/s40615-021-01169-3

Abstract

Abstract

Introduction: 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 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

10.1093/tbm/ibaa042

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

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

Publication year

2020

Journal title

PloS one

Volume

15

Issue

11

10.1371/journal.pone.0241839

Abstract

Abstract

Background 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 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

10.1186/s13063-020-04676-6

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

10.1080/10410236.2019.1623644

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

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

10.1177/0033354919887747

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

Failed generating bibliography.

Publication year

2020

Journal title

Progress in Community Health Partnerships: Research, Education, and Action

Volume

14

Issue

1

Page(s)

117-127

10.1353/CPR.2020.0014

Abstract

Abstract

Background: 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 Women

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

10.1002/jgc4.1217

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