patient-centered pathways to research - axys · patient-centered approaches to research pathways...
TRANSCRIPT
![Page 1: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/1.jpg)
Patient-CenteredApproachestoResearchPathways
SharronClose,PhD,MS,CPNP-PC,FAANEmoryUniversity
SchoolofNursingandDepartmentofHumanGeneticssharron.m.close@emory.edu
![Page 2: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/2.jpg)
WhyCareaboutPatient-CenteredResearch?
• Outcomesthatpatientscanusesoonerratherthanlater• Comparativeeffectivenessofinterventionsmostlikelytohelppatients
• Researchthatinformsclinicaldecision-makinginreasonabletimeframes.
• Patientsandfamiliesoftenoffersolutions(interventions)thatcanbestudied
![Page 3: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/3.jpg)
LessonsLearned:ThePCORIPerspective
• ThoughtIunderstoodgoingin:
• WhatIlearnedintheprocessofwritingagrant
• WhatIlearnedaboutpatient-centerednessintheprocess
![Page 4: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/4.jpg)
Inputs Outputs Outcomes/ImpactThe Problem
• Gaps in Knowledge• Gaps in Research• Lack of Treatment or
Interventions that are Useful to Patients or Families
• Inadequate Communication with Clinicians & Scientists
• Powerlessness to Influence Symptom Management
• Scientists study problems that have limited interest or utility to patients and families
The Investment
• AXYS• Emory University• PCORI• Staff• Volunteers• Time• Money• Research• Technology
ActivitiesHow & What
We do
• Brainstorm Mtg. AXYS/Emory
• Stakeholder Selection
• Online Stakeholder Planning Mtg
• Family Conference 2015
• Scientific Conference 2016
ParticipantsWho We Reach
• Patients• Families• Clinicians• Scientists• Payers• Pharma• Clinical
Administration• AXYS• Emory
University• PCORI
Short Term Results
• AXYS• Emory
University• PCORI• Staff• Volunteers• Time• Money• Research• Technology
Medium TermResults
• AXYS• Emory
University• PCORI• Staff• Volunteers• Time• Money• Research• Technology
Long Term Results
• AXYS• Emory
University• PCORI• Staff• Volunteers• Time• Money• Research• Technology
Assumptions:FamiliesInformingScienceScienceInformingFamilies
ExternalFactors:Time,Location,IndividualCommitment,Conflicts,UnexpectedEvents
BidirectionalTranslationEngagementProject
![Page 5: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/5.jpg)
MonthlyEngagementProcess
• PImeteverymonthwithgeneticsignaturerepresentatives(theywishedtobecalled”ambassadors”toconductastepwiseexplorationofpersonalandclinicalneeds
• Systematiccollaborationensuedtoward“Bidirectionality”ofcommunication
• Goal-drivenplansinitiatedtoinitiatemeaningfulcommunicationbetweenpatients,families,cliniciansandscientitsts
• Buildingtowardtheultimategoalofchangingtheway“science”considersX&Yparticipants.
![Page 6: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/6.jpg)
Science&FamilyAmbassadorEngagement
CallSeptember3,2015
SharronClose,PhD,MS,CPNP-PC
![Page 7: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/7.jpg)
Science&FamilyAmbassadorEngagement
CallOctober5,2015
SharronClose,PhD,MS,CPNP-PCKristyMartyn,PhD,CPNP-PCFAAN
![Page 8: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/8.jpg)
Science&FamilyAmbassadorEngagement
CallDecember10,2015
SharronClose,PhD,MS,CPNP-PCKristyMartyn,PhD,CPNP-PCFAAN
JimMoore,BS
![Page 9: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/9.jpg)
Science&FamilyAmbassadorEngagement
CallApril,2016
SharronClose,PhD,MS,CPNP-PCKristyMartyn,PhD,CPNP-PCFAAN
JimMoore,BS
![Page 10: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/10.jpg)
Science&FamilyAmbassadorEngagement
CallJune28,2016
SharronClose,PhD,MS,CPNP-PCKristyMartyn,PhD,CPNP-PCFAAN
JimMoore,BS
![Page 11: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/11.jpg)
ArrivingatOutcomesYear1
• 2FocusGroups:Patients,FamilyMembers,CliniciansandScientists(Conference)
• UsingQualitativeMethodology:InterpretiveDescription• Results
• MindfulnessofPerson• ClinicalConfusion• YouCan’tStudyThat• Invisibility• SystemsLetdown
FramingtheStructureofFutureResearch
![Page 12: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/12.jpg)
Over24monthsofEngagement
• ProbingclinicalandallX&YChromosome-relatedneeds• Teachingpatientsandfamiliesabouthowresearchisdone• TakingtheoutcomesfromYear2andturningthemintoresearchquestionsthatmattertothem
• Plantore-engagepatients,families,cliniciansandscientists(Conference)toform
• Newresearchquestions• Determinebestmethodologies• Formnewcollaborations
FramingthePATHWAYofFutureResearch
![Page 13: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/13.jpg)
Productivity-DrivenOutcomesYear2
• ResearchProjectOutcomes(Emory)• TrisomyX(HealthandReproductiveConcernsofWomenwithTriX)• XXYY(VoicesofPatientsandCaregiverswithXXYY)• NIPTStudy(AccessibleGeneticCounselingwithNIPT)• Managementofpubertyinadolescents
• Autism• X&YVariations
• HealthcareTransitions• Autism• X&YVariations
![Page 14: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/14.jpg)
UnexpectedDividendsYear2
• CreationofSoutheastRegionalSupportGroup• AttentionofEmoryforeXtraordinarYClinic• StatelegislativeAwareness• DocumentaryFilm
PCORIBlogPost:http://bit.ly/2sklmOV
![Page 15: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/15.jpg)
Patient-DerivedResearchQuestions
“Iwanttoknowwhattodowhenhecomeshomeat3o’clock”• What’sbehindthisstatement?• Executivefunctionandbehavior• Formingaresearchquestion:
• Inboyswith47XXYdoesasystematicprogramwithinatechnology-basedcompanionimproveexecutivefunctiontasksandundesirablebehaviorcomparedtoboyswith47XXYnotreceivingtheintervention?
• Homework,same-daytaskcompletion• Advancedreadinessfornextday• Self-efficacy• Self-esteem• Riskfordepression• QOLchildandparent
![Page 16: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/16.jpg)
InitiatingCollaborations
•KnownCenters&PeoplewithExpertise•AcademicSources
• Universities• Clinics• NIH/PCORI
• SpecificAreasofSpecialty•CreationofNetworks•Co-PI’ing andsubcontractstoco-promoteproductivity
![Page 17: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/17.jpg)
ThinkingaboutComparisonsAcrossGroups
• Severaldiagnosticgroupssharingdisabilityconcerns• X&YVariationswithAutism,FragileX,othergroups• X&YVariationsacrossnationalandinternationalgeographiclocations
![Page 18: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/18.jpg)
Needed:TransparencyofEffortandCo-potentiationofresearch
• Whowantstoplayinthesandbox?• Differentapproachtooutcomes• Patient-centerednessfocusesonuseableoutcomes• Finessingthecurrentfundingstructurestofeaturepatientoutcomesandnotacademiccentersoracademicians
• ReconcilingIMPACToverCLAIMEDOWNERSHIP;Differentandshiftingapproach.
![Page 19: Patient-Centered Pathways to Research - AXYS · Patient-Centered Approaches to Research Pathways Sharron Close, PhD, MS, CPNP-PC, FAAN ... Results • AXYS • Emory University •](https://reader033.vdocument.in/reader033/viewer/2022053015/5f158c6cdad2fb2ddf798516/html5/thumbnails/19.jpg)
Questions?