Supporting and sustaining engagement to retain strategies and disseminating research value in the AllofUs Research Program
Project Number1OT2OD038228-01
Contact PI/Project LeaderCLARK, CHERYL RENEE Other PIs
Awardee OrganizationBRIGHAM AND WOMEN'S HOSPITAL
Description
Abstract Text
ABSTRACT
The AllofUs Research Program is a landmark longitudinal cohort study that aims to enroll 1 million or
more participants reflecting the diversity of the United States and create a unique biomedical data resource
that can equitably advance precision medicine and improve health.
Since 2016, the AllofUs New England Consortium (AoUNE) has contributed to the success of the national
program by engaging, enrolling and retaining individuals in Eastern Massachusetts through a collaboration
of Mass General Brigham (MGB), New England’s largest regional health system, and Boston Medical
Center (BMC), the largest safety net hospital in the Northeast. In the process, we have designed and
implemented robust procedures for participant retention strategies that leverage multimodal engage to retain
strategies in diverse populations. To date, we have enrolled more than 37,000 Core participants of whom
more than 79% come from communities underrepresented in biomedical research (UBR). We have
achieved high retention of our participant partners (PPs), including both passive (87%) and active (>40%)
retention rates.
Importantly, we have contributed to consortium-wide activities that have led to successful scientific
contributions to retention. The AoUNE PIs have led task forces to construct the Social Determinants of
Health (SDOH) survey and the Mental Health surveys, which each have strong and growing response rates.
The AoUNE PIs are active participants in AllofUs engagement activities as Engagement lead within the
national program, and locally with our Community Advisory Panel (CAP). We are well poised to support
the Division of Engagement and Outreach to achieve the NIH AllofUs Area of Interest 1 to focus on:
• Aim 1: Supporting existing participants and retention efforts with a focus on UBR
populations.
• Aim 2: Sustaining engagement efforts and disseminating research findings to participants
as a part of return of value.
We propose a process that will develop evidence-based solutions/models for scalable program wide-efforts
to support the shift from enrollment to an engage to retain model for the AllofUs Research Program.
Public Health Relevance Statement
Data not available.
NIH Spending Category
No NIH Spending Category available.
Project Terms
Advisory CommitteesAllofUs Research ProgramAreaBiomedical ResearchBostonCohort StudiesCollaborationsCommunitiesElementsEnrollmentEnsureEquipment and supply inventoriesEquityHealthHealth PersonnelHealth SurveysHealth TransitionHealth systemHospitalsIndividualLeadLearningLifeLongitudinal cohort studyMassachusettsMeasuresMedical centerMental HealthMethodsModelingNew EnglandParticipantPopulationPopulation HeterogeneityProceduresProcessProcess MeasureRecommendationResearchReview LiteratureSiteTestingUnited StatesUnited States National Institutes of HealthUpdatecommunity advisory boardcost effectivecost efficientdata resourcedesignevidence basehigh standardimprovedinterestmembermultimodalitynovelnovel strategiesoperationoutreachparticipant retentionprecision medicineprogramsrecruitresponseretention ratesafety netsocial health determinantssuccess
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Publications
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