Transforming residential palliative care for persons with dementia through behavioral economics and data science
Project Number5P30AG064105-04
Contact PI/Project LeaderHALPERN, SCOTT D
Awardee OrganizationUNIVERSITY OF PENNSYLVANIA
Description
Abstract Text
The central goal of this proposed Roybal Center is to develop, test, and implement novel interventions that
bridge the dramatic gap between the supply of and need for palliative care services among persons with
dementia (PWD) living in long-term services and support (LTSS) facilities, as well as their family caregivers.
Several innovative aspects of this proposed Center position us to succeed in this challenging but increasingly
important space. First, we have assembled a team comprising more 50 investigators and staff from 5 schools
within the University of Pennsylvania, and the most accomplished investigators of palliative approaches to care
for PWD from 11 peer institutions. These investigators possess content knowledge and tremendous expertise
in leading all Stages of behavioral intervention development as defined by the NIH Stage Model.
Second, we will support these behavioral scientists by linking them with Center faculty with expertise in several
key methodologic areas including behavioral economics, data science, statistics, qualitative methods, health
policy and economics, and implementation science. Our focus on translating behavioral economic insights to
change the behaviors of clinicians and caregivers involved in the care of PWD builds on our recent success
using similar approaches to improve palliative care delivery in outpatient and hospital settings. Our focus on
using machine learning, natural language processing, and network methods will enable us to (a) identify
mechanisms of clinician behavior that account for aggressive care for PWD, (b) identify PWD with the greatest
unmet palliative care needs so as to sustainably target intervention delivery, and (c) more efficiently measure
person-centered outcomes in the context of large, pragmatic trials of the most promising interventions.
Third, this Center is being launched in partnership with Genesis HealthCare, the nation's largest owner of
LTSS facilities, with 401 nursing homes and assisted living facilities across the U.S. These facilities provide
ideal settings within which to develop and test interventions that will be effective and sustainable in the real
world. Further, by developing and testing the interventions in these settings, while continually increasing our
collaborations with other owners of LTSS facilities, we will be ideally positioned to implement effective
interventions in the places in which the majority of Americans with dementia are cared for near the end of life.
This Center will be directed by a Steering Committee, and will include a Management and Administrative Core
housed within Penn's existing Palliative and Advanced Illness Research (PAIR) Center. A Pilot Core will select,
guide, and monitor pilot projects chosen for funding each year. We propose two pilots for funding in the first
year: a Stage I study that seeks to adapt a web-based advance care planning platform for use among PWD
and their caregivers in LTSS settings, and a Stage 0 study that will use data science methods to identify
clinician behaviors associated with hospitalization risk among PWD, yielding targets for future interventions.
Public Health Relevance Statement
NARRATIVE
Although most persons with dementia (PWD) die in nursing homes and other long-term services and support
(LTSS) facilities, few interventions have improved the processes or outcomes of care for such patients. This
Roybal Center will unite junior and senior physician, nurse, and social scientists with expertise in Stages 0-V
behavioral intervention studies, behavioral economics, and data science with a shared goal to develop, test,
and implement interventions to change the behaviors of clinicians and caregivers for PWD in LTSS facilities.
We will achieve this goal by partnering with the nation's leading researchers in palliative care for PWD and the
largest owner of nursing homes, using its facilities as sites for the pilot studies we will support.
NIH Spending Category
No NIH Spending Category available.
Project Terms
AddressAdmission activityAdvance Care PlanningAmericanAreaArtsAssisted Living FacilitiesBehaviorBehavior TherapyBehavioralBenchmarkingBusinessesCaregiversCaringCollaborationsCommunicationComputersConflict (Psychology)DataData ScienceDementiaDiscipline of NursingDiseaseElectronic Health RecordEngineeringFacultyFamilyFamily CaregiverFamily NursingFosteringFundingFutureGoalsGrantHealth PolicyHealthcareHospitalizationHospitalsInstitutionInterventionIntervention StudiesKnowledgeLeadLifeLinkLogisticsMachine LearningMeasuresMechanical ventilationMentorsMethodologyMethodsModelingMonitorNatural Language ProcessingNursesNursing HomesOnline SystemsOutcomeOutpatientsPalliative CarePathway AnalysisPatient PreferencesPatientsPennsylvaniaPersonsPhysiciansPilot ProjectsPositioning AttributePragmatic clinical trialProcessQualitative MethodsResearchResearch PersonnelResearch SupportResourcesRiskSchoolsScienceScientistServicesSiteSocial NetworkSocietiesSpecialistSurveysSystemTestingTranslatingUnited States National Institutes of HealthUniversitiesVariantWorkacceptability and feasibilityadvanced diseasebasebehavior changebehavioral economicscare deliverycare outcomescare systemscaregiver interventionscostdementia careeffective interventioneffectiveness trialefficacy studyelectronic dataend of lifehealth economicshospice environmentimplementation effortsimplementation scienceimprovedinnovationinsightintervention deliverymedical schoolsnovelpalliativepeerperson centeredpragmatic implementationpragmatic trialprovider behaviorsocialstatisticssuccesssymptom managementtherapy developmenttool
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