Improving Measurement of Alcohol Use and Other Disparities by Sex, Sexual Orientation, and Gender Identity through Community Engagement
Project Number3R01AA029076-04S1
Former Number5R01AA029076-03
Contact PI/Project LeaderPHILLIPS, GREGORY L. Other PIs
Awardee OrganizationNORTHWESTERN UNIVERSITY AT CHICAGO
Description
Abstract Text
PROJECT SUMMARY
This proposal seeks to address gaps in Intersex and Variations of Sex Development (I/VSC) health by
investing directly in Intersex-led, grassroots research efforts. The proposed study represents a strong
collaboration between members of the Intersex Research Coalition (IRC) and researchers who lead the EDIT
and ADVOCATE Programs within Northwestern University‘s Institute for Sexual and Gender Minority Health
and Wellbeing (ISGMH). The IRC is a coalition of community partners, medical students, Intersex activists,
physicians, and public health professionals who are interested in learning more about what it means to deliver
affirming care to I/VSC people. The EDIT and ADVOCATE Programs both are dedicated to advancing
community-led research that promotes intersectional sexual and gender minority (SGM) health equity. We
recognize that community participatory action research is a pathway to change in policies and practices that
center intersectional equity for I/VSC people. In brief, we will recruit 200 I/VSC individuals diverse in race,
ethnicity, and gender to complete a survey to elicit feedback on I/VSC health research priorities, experiences of
erasure and affirmation within sex, sexual orientation, and gender identity (SSOGI) measurement in I/VSC
populations, and alcohol use. Qualitatively, we will conduct in-depth interviews with up to 20 I/VSC participants
to identify what existing measurement tools have been used in I/VSC populations, shortcomings of these
measurement tools, what SSOGI information I/VSC people are willing to share in different settings, the nuance
of intersex vs. VSC specific language, and future directions for improved I/VSC population measurement. The
supplement will apply minority stress, intersectionality, and life course theoretical frames and use participatory
action research methods to ensure that future I/VSC research is more effectively positioned to be affirming,
contextually valid, meaningful, and positively impactful to multiply minoritized I/VSC populations. This proposal
leverages the strong foundation for interdisciplinary collaboration, community insight, and effective
dissemination established within Project Recognize, as well as our team’s clear and unique insights into the
current gaps and opportunities in SSOGI measurement that are also responsive to the NASEM report’s call to
measure I/VSC populations. Overall, our interdisciplinary team of investigators, mixed-methods strategies, and
the foundation of community engagement and trust on which the parent grant is built support feasibility of the
completion of all study aims and objectives. This project will result in the development of measures that are
affirming, reliable, and valid in diverse I/VSC populations across multiple contexts. Future adoption of these
measures in public health research will yield the first affirming population assessments of I/VSC health and
inform a community-led, evidence-informed research agenda to pave the way forward for I/VSC health equity.
Public Health Relevance Statement
PROJECT NARRATIVE
Our collaboration of diverse researchers, clinicians, and community members seeks to better understand the
health research needs and priorities of intersex and variations of sex characteristics (I/VSC) communities:
Existing models of health information and data collection completely omit I/VSC populations, inaccurately
assess I/VSC status, or fragment the population by diagnoses. There is a dearth of literature that explores the
social behavioral aspects of the lives of I/VSC people (e.g., alcohol use, depression), and little is known about
the disparities of these factors among I/VSC individuals who are also racial/ethnic, sexual, or genderminorities. This supplement study can be a model of community building and healing as we leverage the tenets
of participatory action research (PAR), grounding our work in community-based needs and emphasizing
collective action, leading to community transformation and social change.
NIH Spending Category
No NIH Spending Category available.
Project Terms
AddressAdoptionAffectAgeAlcohol consumptionBehavioralCaringClinicalCollaborationsCommunitiesCommunity DevelopmentsComputer softwareComputerized Medical RecordData CollectionDedicationsDeformityDevelopmentDiagnosisDiscriminationDisparityEpidemiologyEquityEthnic OriginExclusionFaceFeedbackFemaleFoundationsFutureGenderGender IdentityGenitaliaGeographyGrantHealthHealth ProfessionalHealth PromotionHealthcareHormonalHormonesHuman RightsHuman Rights AbusesIndividualIntersexInterventionInterviewInvestmentsLanguageLeadLearningLegalLife Cycle StagesLinkLiteratureMeasurementMeasuresMedicalMedical StudentsMental DepressionMental HealthMethodsMinorityModelingNavigation SystemOperative Surgical ProceduresOutcomeParticipantPathway interactionsPatient Self-ReportPerceptionPersonal SatisfactionPersonsPhysiciansPoliciesPopulationPopulation SurveillancePositioning AttributeProcessPublic HealthQualitative MethodsRaceReportingResearchResearch DesignResearch MethodologyResearch PersonnelResearch PriorityRiskSecrecySex CharacteristicsSex ChromosomesSex OrientationSexual DevelopmentSexual and GenderMinoritiesShameShapesSocial ChangeSpecific qualifier valueStructureSurveysSystemTrustUnited NationsUniversitiesVariantWorkalcohol measurementalcohol misusebinge drinkingcommunity based participatory researchcommunity buildingcommunity engagementcommunity organizationscommunity partnersdrinking behaviorethnic minorityexperiencegender minoritygender minority healthgender minority health researchhealinghealth care service utilizationhealth determinantshealth disparityhealth equityhealth equity promotionimprovedinformantinsightinterdisciplinary collaborationinterestintersectionalitylensmalememberminority stressparent grantparent projectphysical conditioningpreferenceprogramspublic health researchracial minorityrecruitresearch and developmentresearch in practicescale upsexsex development disordersex disparitysex linked traitsex variablesexual minoritysocialsocial health determinantstheoriestool
National Institute on Alcohol Abuse and Alcoholism
CFDA Code
273
DUNS Number
005436803
UEI
KG76WYENL5K1
Project Start Date
21-September-2021
Project End Date
31-August-2026
Budget Start Date
01-September-2024
Budget End Date
31-August-2025
Project Funding Information for 2024
Total Funding
$99,083
Direct Costs
$61,927
Indirect Costs
$37,156
Year
Funding IC
FY Total Cost by IC
2024
NIH Office of the Director
$99,083
Year
Funding IC
FY Total Cost by IC
Sub Projects
No Sub Projects information available for 3R01AA029076-04S1
Publications
Publications are associated with projects, but cannot be identified with any particular year of the project or fiscal year of funding. This is due to the continuous and cumulative nature of knowledge generation across the life of a project and the sometimes long and variable publishing timeline. Similarly, for multi-component projects, publications are associated with the parent core project and not with individual sub-projects.
No Publications available for 3R01AA029076-04S1
Patents
No Patents information available for 3R01AA029076-04S1
Outcomes
The Project Outcomes shown here are displayed verbatim as submitted by the Principal Investigator (PI) for this award. Any opinions, findings, and conclusions or recommendations expressed are those of the PI and do not necessarily reflect the views of the National Institutes of Health. NIH has not endorsed the content below.
No Outcomes available for 3R01AA029076-04S1
Clinical Studies
No Clinical Studies information available for 3R01AA029076-04S1
News and More
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History
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Similar Projects
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