Outcomes that Matter: Engaging patients, community, and health system
stakeholders to establish person-centered outcomes research priorities
Town Hall Table
OnJune17,‘OutcomesthatMatter’hostedatownhalltoengagepatients,communitymembers,and
healthcarepartnerstoopenadialogonhowtojointlyestablishprioritiesforPatientCentered
OutcomesResearch(PCOR).Thisdocumentincludesthemajorthemesandpossiblesolutionsdiscussed
duringthetownhall.PleaserefertotheExecutiveSummaryforabroadoverviewofthedayorthe
MeetingMinutesforthemostdetailedaccount.
ThisdocumentsummarizesthelessonslearnedfromourtownhallonJune17.Thetownhallbeganthe
conversationaroundresearchthatmatterstoourcommunityasdefinedwithinputfrompatients,
communitymembers,researchers,andhealthcareproviders.Thepurposeofthetownhallwasto
broadeninvolvement,expandthereachofcurrentefforts,andconsiderhistoricandcurrentpatientand
communityengagement.
Thegoalsofthe“OutcomesthatMatter”meetingwereto:
• Worktogethertocomeupwithresearchthatmatterstopeopleinourcommunity.
• Createaspacetoshareideasandexperiencesamongpatients,families,communitymembers,
healthcareproviders,andresearchers.
• Talkaboutresearchthatmatterstoourcommunity.
• Encourageopentalkandinvolvement.
“We”inthisandallprojectdocumentsreferstothecollectivepartnershipofpatients,families,health
careproviders,communitymembers,andresearchers.Thisoverarchingprojectisaresultoflongstandingcollaborationsamongthecommunity,healthsystem,andresearchers.Thetownhallwasone
phaseofthelonger-termproject.Collectively,wewillworkontheseissues,throughopendialogueand
innovativethinking.Wewillbecollaborativelydevelopingpossiblesolutionsandnextstepsatthenext
setofcommunityworkshopsinfall2016.
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Theme
PossibleSolutionsfromtownhallparticipants
Generalthemesexpressedduringpanelpresentation
Alegacyofmistreatmentanddistrust
remainsinresearchandclinicalcare.
Buildtrustthroughcommunicationandeducation.
Therehasbeenalackofresearcher
engagementwiththecommunity.
Increaseengagementwiththecommunity.
Thecommunityneedstobeinvolvedas
equalpartnersfromthebeginning
throughauthenticandmeaningful
engagement.
1.Bringcommunityinatbeginning
2.Ensureequity(communication,compensation)
3.Assesseveryone’sreadinesstoparticipate,the
community’spriorities,andpotentialbarriersto
participation.
4.Involvepatientsandthecommunityduringbrainstorming
sessions,beforetheresearchquestionisestablished.
5.Ensureadequateandequitablecompensation.
6.Patientandcommunitymembersneedtounderstandthe
directbenefittopeople.
Thereisaneedtoincreasemutualliteracy 1.Researcherslearnlaylanguage.
betweenresearchersandthecommunity. 2.Workcollaborativelywithcommunitytocreatematerialswith
appropriateliteracylevel.
3.Increaseunderstandingofresearchtermsincommunity.
Researchersoftenapproachtheprocess
Recognizeandleveragepatientandcommunityexpertise.
astheexperts.However,participantsare
expertsintheirownexperience.
Themanyfacetsofthecommunityneed
tobeconsidered.
Considerthemanyfacetsofdiversityinthecommunity(disability,
LGBTQ,veterans,elderly,children,etc).
NorthCarolinaCentralUniversity(NCCU)
desirestobeamoreactivepartnerin
research.
CollaboratewithandinvolveNCCUasapotentialpartner
Morediverse,underrepresentedmembers 1.Decreasethestigmaofresearchthrougheducationand
couldbeinvolvedinresearch.
authenticrelationships
2.Buildgenuinerelationshipspriortoresearch
3.Engageambassadorsrepresentativeofadiverse,
underrepresentedcommunitywhocanbridgethegap.
Aculturalshiftcanhelpthelocal
Engagethecommunityingroundupcollaborationandbuilding
communitytoparticipateinresearch.
toolkits,educationalmaterials,guidesthatmatchcommunity
needs.
Aligningresearchwithissuesthataremeaningfultopatients,families,andcommunities
Researcherneedtoengagewithandbuild 1. Researcherscanattendcommunityeventsandmeetings.
relationshipsbeforetheprojectbegins
2. Researcherscangotospecificlocationssuchasretirement
communities,recreationalcenters,andchurches.
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Researchersneedtofindoutwhatthe
community’smostimportantquestions
andissuesarebeforeresearchstarts.
Researcherscouldbeeducatedon:
• Basicengagementprinciples
• Equityandpower
• Listening
• Mutualrespect
• Learningcommunity’slanguage
• Socialdeterminantsofhealth
• Barriersinpatients’lives
Communitycanbeeducatedonresearch:
• Differenttypesofresearch
• Valueofresearch
• Connectionbetweenresearchand
thecommunity
• Researchlifecycle
• Patient’sandcommunity’srolein
research
• Protectioninresearch
Createacommunityoflearningforall
stakeholders
1.Focusgroupscanprovidelearningmaterial.
2.Createcurriculumonthesetopics.
3.Delivercurriculumthroughvariousvenues.
1.Developanduseacommonlanguage
2.Considersensitiveterms(patient,research)
3.Communityandresearcherslearnfromeachother.
Wewanttorethinkresearchprocess
1.Wecandevelopquestionsofvalue.
2.Wecanworkcollaborativelyfromthebeginning.
3.Wecanseekfundstogether.
4.Weneedtocommunicatethroughoutprocess.
Researchersneedtotakeresultsto
1.Wecanteachwaystocommunicateresults.
communityandeffectivelyexplainthem.
2.Thecommunitycanhelpinformcommunicationstrategiesfor
researchresults.
3.Patientsandcommunitymemberscanhelpcreateandreview
researchresultmaterialsformeaningandunderstanding.
Weneedacenterthatfacilitatesresearch 1. Increaseefficiencyandreduceburdenoncommunity.
andcommunicationwithinthecommunity 2. Potentialparticipantscanbematchedwithstudiesofinterest.
(includinggovernmentandgrassroots
3. Communicationwiththecommunitycancomefromone
organizations).
place.
4. TheCentercanhighlightresearchsuccesses.
5. TheCentercanbuildadatabaseofresearcherswithresearch
needs.
6. TheCentercanconnectthegrantwithcommunityinstitutions.
7. ThecommunitycanshareresearchideaswiththeCenter.
8. Staffcanlearnbestpracticesforresearchpartnerships.
9. TheCentercanmaintainalibraryofmaterialsforresearchers
andcommunity.
10. TheCentercanbethehubforreducingstigmatization,
increasingunderstanding,andbuildingpartnerships.
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Formingandmaintainingresearchpartnershipsfocusedonimprovingpatient,familyand
communityhealthandwell-being
Mistrustisprevalent.
Buildanddeveloprelationships
Powerdifferentialsmakerelationships
difficult.
1.Addressracialequity.
2.Bringallpeopletothetableearly.
3.Recognizecommunityexpertise.
Researchersneedtounderstandthe
historyandcontextofthecommunity.
1.Communitytourscanofferresearchersexposuretoimportant
Researcherscouldincreasetheircultural
competenceandlearnmoreaboutthe
historyofthecommunity,including
mistrust/historicbetrayal/hurt,making
equitablepartnershipsmoredifficult.
Relationshipsthrivewithcommunity
building.
Educateresearchersaboutthehistoryofthecommunity.
communitylandmarksandhistory.
2.Curriculumcanincludethehistoryofmistreatmentwithin
diverse,underrepresentedcommunities.
1.Investtimeincommunity.
2.Learncommunity’svalues.
3.Increasenon-profitsatthetable.
Itisimportantforresearchersto
1.Sponsorapatientpanelforhealthcareprovidersand
understandpatients’needsandlives.
researchers.
2.Getinformationtohealthcareproviders
Buildequitablepartnershipsamongpatients,physicians,andresearchers
Wecandeveloptheworkforce.
1.Tapintocommunityleaders,retiredemployees,andnew
graduatesaspotentialemployees.
2.Broadenawarenessaboutwhatitmeanstoworkinresearch
(careerpaths,typesofjobs,etc.).Createresearchtrainingwith
highschoolsandourlocalcommunitycollegesanduniversities.
3.Considerhiringpeoplewhohavetheconditionofinterest.
4.Hirepeoplewhoreflectthecommunity.
Meaningfulpartnershipstakework.
1. Understandanddisperseequitably:power,decision-making,
fundallocation,andcredit(co-authorship).
2. Workcollaborativelytosharefindings.
3. Increasetransparency
4. Intentionallyengagepeoplewhotrulyreflectthegroupsof
interest.
5. Incentivescanbecreative–gympasses,communitygarden.
6. Focusonpatients’voicesandneeds.
7. Understandandbreakdownbarrierstoparticipation.
Acultureoflearningcouldincreaseequity. 1.Allpeoplewouldbenefitfrombeingawareofwhatprograms
alreadyexist.
2.Buildawarenessofculturalandcommontermsinthe
community(forexample,diabetesvs‘sugar’,hypertensionvshigh
bloodpressure).
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Successfulmodelsofdisseminatingresearchtopatients,families,andcommunities
Multiplemethodsneededtogetresearch
out.
1.Communityresearchday
2.Leveragecommunityanddevelopworkforcetoshareresults
3.Engagewithschools
4.Engagewithchurches
5.Holdopenconversationswithcommunity
6.Morefullyutilizemedia
7.Shareresultsinvariouslocations(barbershops,stores,
communitycenters)
Increasedcommunicationneeded
throughoutproject
Developlong-termcommunicationplan
NextSteps:Ourplanistodiscuss,asagroup,theaboveissuesandpossiblesolutionsand
comeupwithnextstepsinourworkshopseriesinthefall.Wewillreachouttoadditional
patients,families,communitymembers,healthcareproviders,andresearcherstobroadenour
reach.Wewillhaveaworkshopinthefall,offeredattwodifferenttimes,toworkthrough
theseissues.
Forquestionsorifyouwouldlikeaprintedversionofthisdocument,pleasecontactPamela
[email protected].
DocumentsarelocatedattheDukeCenterforCommunityandPopulationHealth
Improvement’swebsite:
http://www.dukehealthimprovement.org/outcomes-that-matter.html.
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