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2017-18Patient and Family Advisory Council
Annual Report
“Guided by the needs of our patients and their families...”
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MASS GENERAL MISSION
“Guidedbytheneedsofourpatients
andtheirfamilies,Massachusetts
GeneralHospitalaimstodeliverthe
verybesthealthcareinasafe,
compassionateenvironment;to
advancethatcarethroughinnovative
researchandeducation;andto
improvethehealthandwell-beingof
thediversecommunitiesweserve.”
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MASS GENERAL OVERVIEW
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Foundedin1811,MassGeneralisthethirdoldestgeneralhospitalintheUnitedStatesandtheoldestandlargestinNewEngland.MassGeneralcontinuesitstraditionofexcellencetoday.MassachusettsGeneralHospitalhasbeenrankedamongthetopfivehospitalsintheUnitedStatesbyU.S. News & World Reporteversincetherankingsbegan.MassGeneralisrecognizedas#4outofnearly5,000hospitalsconsideredintheranking.MassGeneralistheonlyhospitalrankedinall16specialtiesconsideredbyU.S. News & World Report,atestamenttothebreadthanddepthofourexpertise.MassGeneralpatientsratetheirexperienceswithusveryhighly,withnearlyallindicatingtheywouldbeverylikelytorecommendustoothers1.Wealsoconsistentlyachievehighratingsfromprofessionalorganizations.Wehavebeenrecognizedby:
• TheAmericanNursesCredentialingCenterforourexcellenceinnursingasaMagnet®hospital
• TheSocietyofThoracicSurgeonsforourexcellenceincardiothoracicsurgery
• TheJointCommissionforourexcellenceinstrokecarewithaComprehensiveStrokeCertification
• TheLeapfrogGroupforourqualityandsafetywithan“A”gradein2018
Inaddition,ourcliniciansandresearchersarerecognizedathomeandinternationallyfortheircontributions.
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PatientsatMassGeneralhaveaccesstoavastnetworkofphysicians,nearlyallofwhomareHarvardMedicalSchoolfacultyandmanyofwhomareleaderswithintheirfields.Inaddition,MassGeneralHospitalforChildrenprovidesafullrangeofpediatrichealthcareservices,fromprimarycaretoleading-edgetreatmentofcomplexandraredisorders.MassGeneralisa1,035-bedacademicmedicalcenterthatofferssophisticateddiagnosticandtherapeuticcareinvirtuallyeveryspecialtyandsubspecialtyofmedicineandsurgery.Inaddition,thehospitalprovidescareandservicesinmultiplehealthcenterslocatedwithinneighboringcommunities,includingBackBay,downtownBoston,Chelsea,Charlestown,Danvers,Everett,NorthEndandRevere,aswellasatMGHWestandtheNorthShoreMedicalCenter.ThehospitalalsoholdsconcurrentLevel1verificationforadultandpediatrictraumaandburncare.TheMassGeneralHospitalforChildren,MassGeneralprovidesafullrangeofpediatrichealthcareservices,fromprimarycaretoleading-edgetreatmentsofcomplexandraredisorders.ThehospitalholdsconcurrentLevel1verificationforadultandpediatrictraumaandburncare.
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MassGeneralannually:
• Admitsapproximately49,500inpatients
• Handlesnearly1.7millionoutpatientvisits
• Recordsmorethan108,000emergencyroomvisits
MassGeneralandBrighamandWomen’sHospitalarethefoundingmembersofPartnersHealthCare,anintegratedhealthcaredeliverysystemthatincludescommunityhospitals,primarycareandspecialtyphysicians,specialtyfacilities,communityhealthcentersandotherhealth-relatedentities.MassGeneralhaslongbeenaleaderinsuccessfullybridginginnovativesciencewithstate-of-the-artclinicalmedicine.MassGeneralconductsthelargesthospital-basedresearchprogramintheUnitedStates,withanannualresearchbudgetofmorethan$912million.Thisfundingdrivesdiscoveriesandbreakthroughsinbasicandclinicalresearch,whichtranslateintonewandbettertreatmentsthattransformmedicalpracticeandpatientcare.
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Inaddition,MassGeneralistheoriginalandlargestteachinghospitalofHarvardMedicalSchool,wherenearlyallMassGeneralstaffphysicianshavefacultyappointments.Sincethehospital’sfounding,MassGeneralhasbeencommittedtotrainingandmentoringthenextgenerationofinternationalleadersinscienceandmedicine,providingawealthofopportunitiesforphysicians,nurses,andotherhealthprofessionals.Theseclinicians,inturn,lendfreshandinnovativeperspectivesonhowtotreatandcareforpatients.
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MissionDriven Withinthislarge,complexenvironmentofcare,itisourmissionthatguidesourindividualandcollectivebeliefs,decisionsandactions—ourwork.Rewritteninrecentyearswithdirectinputfrompatientsandfamilies,thisstatementofpurposeprovidesthefoundationforthehospital’spatient-andfamily-centeredapproachtocare:
“GUIDEDBYTHENEEDSOFOURPATIENTSANDTHEIRFAMILIES,weaimtodelivertheverybesthealthcareinasafe,compassionateenvironment;toadvancethatcarethroughinnovativeresearchandeducation;and,toimprovethehealthandwell-beingofthediversecommunitiesweserve.”
Thehospital’sPatientandFamilyAdvisoryCouncils(PFACs)serveasaprimaryvehicleforincorporatingthepatientandfamilycareexperienceintoourplanningandday-to-dayhospitaloperations.
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PFACsatMassGeneral MassGeneralformeditsfirstPatientandFamilyAdvisoryCouncilseventeenyearsago,withthelaunchoftheMassGeneralHospitalforChildren(MGHfC)FamilyAdvisoryCouncilin1999.Followingtheirlead,otherhigh-volumespecialtyareaslaunchedtheirownservice-specificPFACs:MGHCancerCenterin2001andtheMGHHeartCenterin2007,andthehospitalformeda GeneralPFACin2011.Inaddition,thehospital’sAmbulatoryPracticeoftheFutureoperatesaCareAlliance.ThesePFACsrepresentthehospital’smostwidelyusedclinicalservicesandrepresentalargeproportionofthecareprovidedatMassGeneral. Thehospital,patientsandfamilieshavefounditbeneficialtooperatemultiple,targetedPFACs,eachbringingvoicetoaspecificpatientandfamilyexperience,
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environmentofcare,and/orpriorityareaforthehospital.ThesePFACsareoptimallysituatedtoimpactthedeliveryofcarefortheirrespectiveanduniquepatientpopulations.Collectively,theyarepositionedtoinfluencehospitalwideinitiatives,withtheaddedbenefitofbringingmultiple,authenticandhighlyrelevantperspectivestothetable,andultimately,tothehospital’sgoverningbody,theBoardofTrustees.
ThePFACscontinuetodirectandshapethepatientexperienceatMassGeneralbyparticipatingonkeyservice-basedandhospitalwidecommittees,reviewingeducationalandothermaterialsforpatientsandfamilies,lendingtheirwisdomandvoicetostafforientationsessionsandeducationalofferings,bringingforwardnewideasforservicesandserviceenhancements,reviewingblueprintsandplansfornewpatientfacilities,andsomuchmore.Aboveall,theybringanexperienceandperspectivetothetablethatnootherscanreplicate,andforthatweareallthebetter.
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“Guided by the needs of our patients and their families...”
General PFACestablished 2011
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GeneralPFAC established 2011
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MISSIONTocontinuouslyembracetheopeningwordsoftheMassGeneralMissionStatement,“Guidedbytheneedsofourpatientsandtheirfamilies,”tosystematicallyintegratethepatientandfamilyvoiceinservices,programs,andinitiativesacrosstheorganization,andtopromoteconsistentlycompassionatecareexperiences.Overthepastyear,theGeneralPFAC(G-PFAC)hasengagedinnumerouspartnerships,collaborations,andactivitiesdrivenbyitsmissionandestablishedannualgoals:
1. PromoteG-PFACmemberparticipationoncommitteesacrossMassGeneral,soastofacilitateintegrationofthepatient/familyperspectiveinservices,programsandinitiatives.
2. ExpandawarenessoftheG-PFACacrosstheMassGeneral.3. AlignG-PFACactivitieswiththestrategicimperativesofthehospital-Clinical
Care,Research,Community,andEducation;includefocuson2018organizationalgoalsandadditionalpriorities.
4. EnhanceG-PFACmemberunderstandingsofMassGeneralinfrastructureandoperations,byinvitingleadersandrepresentativestoG-PFACmeetings.
5. ContinuetorecruitnewG-PFACmemberswhorepresentthediversepopulationofthepatientsservedbyMassGeneral.
G-PFACmemberparticipationonMassGeneralandPartnerscommittees,taskforces,andinitiativescontinuestobestrongandhasexpandedovertime.TheG-PFACalsohasreceivedregularrequestsforfeedbackfromacrosstheorganizationandsystemandprovidedthepatient/familyperspectiveonmanyareasofstrategicpriority,bywelcominggueststomonthlymeetingsandprovidinginputremotely.TheG-PFACengagedinmulti-prongedeffortstoadvanceorganizationalandcommunityawarenessoftheworkofPFACs,andthepowerofthepatientand
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familyvoice.ThispastyeartheG-PFACintroducedseveralnewpatient,family,andstaffmembersandcontinuestobeledbypatientandstaffmemberco-chairs.TheG-PFACcontinuestouseabestpracticeofassigningbuddiestohelpguidenewmembersintotheroleofG-PFACmembership.NewG-PFACpatientandfamilymembersparticipateintheMassGeneralVolunteerServicesorientationallowingforenhancedengagementthroughouttheorganization.
Inthespringof2018,theG-PFACwasrecognizedbyMassGeneralleadershipwithaPartnersinExcellence(PIE)awardforitshardworkandcommitmenttoadvancingthecareexperienceofpatientsandfamilymembers.
2017-2018Topics–Presentations/Feedback
Throughtargetedrequestsandmonthlymeetings,theG-PFACreviewed,providedfeedbackon,andlearnedaboutaspectrumoftopicsspanningMassGeneralsettingsandstrategicimperatives.Thesetopicsincludedthefollowing:
• Biobank/AllofUs• DigitalHealth• Disparities&equityinhealthcare• Empathyinthepatient/providerrelationship• Healthcareexperienceabroad• KindCareBundleproposal• PatientGeneratedHealthData(PGHD)Connect• Planningforthefuture-Continuumengagementmaterials• PrimaryCare/SpecialtyCarereferrals–InfectiousDisease• Sepsis&HospitalAcquiredInfections• SpiritualCare• TraumaInformedCare• 2019QualityandSafetyGoalsettingprocess• SpauldingRehabilitationHospital-tourandlearnings
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ParticipationinMassGeneralCommittees,TaskForces,andInitiatives:
G-PFACmemberscontinuedtoparticipateinongoingcommittees,taskforces,andinitiativesacrossthehospitalandsystem,providingthepatient/familyperspectivewithininterdisciplinarygroupsconsideringavarietyoftopics.
• BlumPatient&FamilyLearningCentero AworkingcommitteeofseveralG-PFACmembersfocusesonavarietyofaspectsofpatienteducationandcollaboratescloselywiththeBlumPatient&FamilyLearningCenter.
• AnesthesiaQualityandSafetyCommittee• BioBankCommitteeAdvisoryCouncil• EngagementAdvisoryCommittee–ContinuumProject• KittyHawkTaskForceAdvisoryCouncil• QualityOversightCommittee• icaremodelfocusgroup• icareinterviewsforvideotobeusedforhospital-widetrainings• PartnersPatientExperienceLeadershipCommittee• PartnersPatientExperienceSummit2018-sessiondevelopmentandpanel
participation• PartnersTelehealthCommittee• PatientPerspectiveonPerioperativeCare(P3C)Committee• PatientSafetyAwarenessWeek• Simulation-ManagingPatientDischargeExpectations
AdditionalActivities
• G-PFACpatient/familyandstaffmembersparticipatedinmultiplenationalconferencesandforumsandsharedlearnings:
o 8thInternationalConferenceonPatientandFamily-CenteredCare:PromotingHealthEquityandReducingDisparities,InstituteforPatientandFamilyCenteredCare(IPFCC),Baltimore,MD
o NurturingtheCoreCompetenciesofEffectivePFACAdvisors,IPFCC,webinar
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o ImprovingDiversityinPatientandFamilyAdvisoryCouncils,IPFCC,webinar.
o BerylInstitutePatientExperienceConference2018,Chicago,IL• PreparedmaterialsinsupportofincreasingPFACmemberparticipationon
hospitalcommittees:PatientAdvisorPositionDescription,PreparingtoCollaboratewithPatient/FamilyAdvisors,PFACMemberUnderstandingsandExpectations.
• HostedG-PFACtablesintheWhitelobbytoraiseawarenessacrosstheMassGeneralcommunityabouttheG-PFACandtheroleofPFACs,aswellastoidentifypotentialnewmembers.
• IncreasedexposureofG-PFAConMassGeneralsocialmediasites,includingFacebookandLinkedIn,andinternalandexternalMassGeneralwebsites.PublishedarticlesinprimaryMassGeneralHospitalandPhysiciansOrganizationpublications.
• ProducedcompilationofG-PFACmemberbiographies,includinginformationabouteachG-PFACmember—sharedinternallywiththegroupasawayformemberstogettoknoweachotherbetterandtobuildrapport.
• Enabledcapacityforremoteparticipationinmonthlymeetings,asneededifmembersarenotabletobepresentinperson.
• CreatedaPFACemblem.• FacilitatedquarterlymeetingofMassGeneralPFACChairs.• SuccessfullyhostedjointMassGeneralPFACeventinNovember2017
featuringPFACmemberpaneldiscussionsfacilitatedbyDr.AnnieBrewster,HealthStoryCollaborativeFounderandExecutiveDirector.TheeveningprovidedopportunityforallPFACmemberstocometogether,forseniorleaderstothankPFACmembersfortheircontributions,toraiseawarenessofPFACsacrosstheorganization,andtohighlightthepowerofthepatient/familyvoice.PerspectivessharedattheJointPFACmeeting:
“WhenIwasinaroomwithpeoplewhoarerunningthatdepartment,theytookmeseriously.TheylistenedtowhatIhadtosayintermsofrepresentingmyselfasaperson,asapatient,andthen,representingotherpatients,anditfeltamazingtobeabletohavethatvoice...Ithinkitspeaksvolumestotheculturethathasbeencreatedhere.”
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“OneofthegreatthingsabouttheFamilyAdvisoryCouncilisthattheyprovideforsystemicchange.AndIgettotalktoresidentsontheirfirstday,andtellthemaboutwhatit’sliketobetheparentofachronicallyillchild.AndIgettotalktonurses,andIgettotalktofrontdeskstaff,andhopefullyIgettochangethingssystemically.”
“OurPFACmembershaveamazingstoriestotell,whichinformusoneverylevelabouthowbesttoachieveourmission.”
“PFACmembersaresoughttoserveasactivemembersoncommitteesandinitiativesofstrategicperformancetosharetheirideasabouthowtobestshapeprogramsandserviceandtoenhancethecareexperience.”
• CollectedfeedbackonG-PFACcollaborationsoverthepastyear.Belowaresomeofthecommentsreflectingthesecollaborations:
“[PFACmember’s]perspectiveandthoughtfulcontributionshavebeenabsolutelyinvaluable.”“Sometimestheprioritiesofourpatientsaredifferentthanthoseofthecaregivers,andit'simportanttoknowthis.”“Theirfeedbackisalwaysveryhelpfulinimprovingthecontentofstaff/leadershipservicetrainingsandcoachingservices.”
“Membersprovideuswithvaluableinsightabouttheirknowledge,attitudes,behaviors,beliefs,andinformationneedsonparticularhealthtopics.Theirperspectivesallowustomakeimprovementstothepatienteducationmaterialsweworkonforhospitaldepartments.”
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G-PFACMembers ExecutiveCommittee
JulieDeCostaPatientCo-ChairLizaNyekoStaffCo-ChairRobinLipkis-OrlandoStaffWilliamKiefferIIIPatientMember-atLarge
MembersEvelynAbayaah(staff)DiannBurnham(staff)RobertChenHilaryDeignanCatherineDuffekAnnGaldosMelissaHoytSusanKeshianStuartMurphyKimNorthrop(staff)JerryPallottaDanielRanti(retired)MattReidElsirSanousi(staff)LisaScheck(staff)MelissaSheaAlexaSherrillJoyceSmithCarrieStamosKathyVerniJoyWu
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GeneralPFACBylaws
Article1.OverviewTheMassachusettsGeneralHospitalGeneralPatientFamilyAdvisoryCouncil(GPFAC) providesaformalcommunicationvehicleforpatientsandfamiliestotakeanactiverolein improvingthepatientexperienceatMassGeneral.TheGPFACfocusesonrepresentingthe patientvoiceinprovidingfeedbacktodepartments,services,programs,andpracticesacross MassGeneralsoastoenhancethepatientandfamilyexperience.Ourvisionistoachievealevelofcarewherepatientandfamilyinvolvementisexpectedand welcomedbyall.Wewillachievethisthroughcollaborativeeffortsbetweenpatients, families,staff,physicians,andadministrationofthehospital.Article2.MissionStatementGuidedbytheMassGeneralMission,CredoandBoundaries,theGPFACisdedicatedto ensuringthatourpatientsandfamilieshaveasuccessful,compassionate,andsupported healthcareexperience.Article3.Goals
Section1.Advise:Workinanadvisoryroletoenhancepatientandfamilycenteredcare initiativesatMassGeneral.
Section2.Support:SupportMassGeneralstaffandleadershipinenhancingpatientand family-centeredfocus.Actasasoundingboardforimplementationofnewprogramsand reviewandenhanceexistingprogramsacrossMassGeneral.
Sections3.Participate:Encourageandsolicitpatient/familymemberrepresentationon committeesandworkgroupsperrequestsfromacrosstheorganization.
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Section4.Inform:Proactivelyidentifyopportunitiesforpatientstoinfluenceandparticipate ineducationalinitiatives.
Section5.Represent:Bringforwardpatientandfamilyperspectivesaboutthehealthcare experiencesatMassGeneralandserveasacentralresourceforthevoiceofthepatientand family.
Section6.Evaluate:AssesstheroleoftheGPFACinimprovingexperiencesforpatients andfamilies.
Article4.StructureandMembership
TheGPFACwillconsistofatleast16patient/familymembersideallyrepresentingthe diversityoftheMGHcommunity.UptoeightMGHstaffmembersalsomayserveontheGPFAC.TheGPFACwillincludeaPatient/FamilyCo-Chair,aStaffCo-Chair,Patient/FamilyViceChair,andanExecutiveCommittee,asprovidedforinArticles7and8. Patientsorfamilymembersshouldco-leadtheGPFAC.ThestructureoftheGPFACmay changeovertime.
Article5.NominationandApplicationProcess
Section1.RecruitmentRecruitmentofpatientandfamilyGPFACmembersisinitiatedbyreferral,solicitations throughtargetedmailings,and/orconversationswithpotentialcandidates.Section2.MembershipCriteriaMembersareselectedbasedonthefollowingcriteria:
• ExperienceasapatientorfamilymemberatMGH• Abilitytorepresentpatientcareexperience• Willingnesstoworkinanadvisoryrole• Goodlisteningskills• Abilitytointeractwellwithdifferinggroupsofpeople• Respectofothers’perspectives
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• Abilitytoparticipateinaconsistentandagreeduponscheduleofmeetings,• Abilitytoparticipateinsubcommitteesandinhospitalcommittees,
meetings,and/or workgroups,stronglypreferred• Commitmenttoserveforatwo-yeartermwithpotentialtorenewattheend
oftheterm
Section3.MembershipSelectionApplicationsaresenttoidentifiedprospectivemembers.Applicantsarescreenedbystaff, andthoseidentifiedasviablecandidatesaretheninterviewedbyselectedGPFACmembers andstaff.Thosewhoareidentifiedastopcandidatesbyinterviewerswillbereviewedbythe ExecutiveCommittee,andsubsequentlynotifiedbytheCo-ChairsoftheGPFACastotheirselection.Section4.TermsofAppointment
• GPFACpatient/familymembersareappointedforatermof2years.• GPFACpatient/familymembersmayrequesttobereappointedforan
additionaltermoftwoyears,withtotalconsecutiveyearsnottoexceed6.• GPFACpatient/familymemberswhohavecompletedthe6yeartermmay
applytobecome amember.againafterahiatusof1year.GPFACmemberswhoareselectedtojoinagainbecomeeligible,asanyGPFACmember,foranother2yearterm.Amembershallnotservemorethanatotalnumberof8years.
• Resignationswillbesubmittedinwritingorviae-mailtotheCo-Chairs.• Vacanciesmaybefilledduringtheyearasneeded.
Article6.RolesandResponsibilitiesofMembers
Section1.RolesandResponsibilitiesforPatient/FamilyMembers
• AttendeachGPFACmeetingor,wheneverpossible,notifyaCo-Chairinadvance,ifunable toattend.
• Prepareandengagethoughtfullyandconstructivelywithrespecttotheissuesandideas discussedduringeachsession.
• Proactivelydriveimprovementandbringcreativeideasforchange.• Respecttheuniquebackgroundandperspectiveofeachmember.• Berealisticandmindfulofthehospital’sbudgetaryconstraints.
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Section2.RolesandResponsibilitiesforStaffMembers
• AttendeachGPFACmeetingor,wheneverpossible,notifyoneoftheco-chairs,inadvance, ifunabletoattend.
• Identify,invite,vetand/ororientpotentialGPFACpatientandfamilymembers.
• AlignwithandfacilitateGPFACsubcommittees.• Facilitatediscussionsandengageallmembers.• ProvidereportstotheGPFACofprogressonongoingprojectsandany
hospitalinitiatives ofinteresttothegroup.• Minimizepotentialbarrierstoachievingestablishedgoals.• BeanadvocatefortheGPFAC.
Article7.RolesandResponsibilitiesofOfficersoftheGPFAC
Section1.Patient/FamilyMemberCo-Chair
• AttendandpresideateachGPFACmeeting.• IncollaborationwiththeExecutiveCommittee,developandimplement
strategicinitiatives oftheGPFAC.• IncollaborationwiththeExecutiveCommittee,setagendasformeetings.• IncollaborationwiththeExecutiveCommittee,managethepatientand
familymember recruitmentprocess.• ManagecommunicationswithGPFACmembers,includingdistributionof
agendas,minutes,anyadditionalmaterials.• WorkwithstaffCo-ChairincommunicatingactivitiesoftheGPFACtoMass
General leadership.• WorkwithstaffCo-ChairinservingasanadvocateforPFACsacrossMass
Generaland Partners.• RepresentMassGeneralPFACsinthehealthcarecommunity,asappropriate.• ParticipateinPFACChairsmeeting.• ParticipateinplanningofannualPFACmeetings.
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Section2.StaffCo-Chair
• AttendandpresideateachGPFACmeeting.• IncollaborationwiththeExecutiveCommittee,developandimplement
strategicinitiatives oftheGPFAC.• IncollaborationwiththeExecutiveCommittee,setagendasformeetings.• IncollaborationwiththeExecutiveCommittee,managethepatientand
familymember recruitmentprocess.• WorkwithPatient/FamilyMemberCo-Chairinmanagingcommunications
withGPFAC members.• CommunicateactivitiesoftheGPFACtoMassGeneralleadership,andserve
asaliaison withMassGeneralstaff.• ServeasanadvocateforPFACsacrossMassGeneralandPartners.• RepresentMassGeneralPFACsinthehealthcarecommunity,as
appropriate.• ParticipateinPFACChairsmeetings.• ParticipateinplanningofannualPFACmeetings.• CheckinatleastquarterlywithformerGPFACmembersservingon
Committees throughoutthehospital,toensureseamlesstransitionandpositiveparticipationinthe Committees,andactasliaisonbetweenformerGPFACmembersandCommitteeChairsas needed.
Section3.ViceChair
• SupporttheGPFACCo-Chairsinongoingactivities,asdescribedabove.• ServeasCo-ChairofGPFACmeetings,asnecessary.• SupportdocumentationandmeasurementofthesuccessesoftheGPFAC.
Section4.Secretary
• RecordminutesofeachGPFACmeeting.• RecordminutesofeachExecutiveCommitteemeeting.• ProvideminutestoCo-Chairs,and/ordesignatedExecutiveCommittee
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member(s)ina timelymanner,fortheirreview,priortodistributiontomembersoftheGPFAC.
Section5.ImmediatePastPatient/FamilyMemberCo-Chair
• UponcompletionofthetermasCo-Chair,thepatient/familymemberwouldserveas ImmediatePastCo-Chairforatermof1year.
• Thispositionwouldbeexemptfromthemaximum6consecutiveyeartermlimit,and8 totalyearlimit.
Article8.ExecutiveCommitteeoftheGPFAC
Section1.Membership
• TheExecutiveGPFACCommitteewillconsistofthePatient/FamilyMemberCo-Chair,theStaffCo-Chair,Vice-Chair,Secretary,andstaffmembers,andmayincludeaselected GPFACmemberatlarge.Thetotalmembershipshallnotexceed7.
Section2.DutiesandResponsibilities
• ActasthenominatingcommitteeoftheGPFACmembership,bringingforthnominations forPatient/FamilyMemberCo-Chair,Vice-Chair,andSecretaryannuallyintheFall.
• ParticipateintheGPFACmembershipselectionprocess,asprovidedinArticle5,Section3.
• ParticipateinthesettingofagendasforeachGPFACmeeting,andothersuchdutiesasmay bedetermined.
• ActonbehalfoftheGPFACbetweenmeetings,asnecessary.
Article9.TermsofOfficers
ThetermsofGPFACOfficerswillbeasfollows:
• ThetermoftheGPFACpatient/familymemberservingasCo-Chairisnottoexceed2 years.
• ThetermoftheViceChairshallbe2years,directlyprecedingtheassumptionoftheroleasPatient/FamilyCo-Chair.
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• ThetermoftheSecretaryshallbe2years,subjecttorenewalfor2subsequent2yearterms.
• ThetermoftheImmediatePastCo-Chairshallbe1year,directlyfollowingthetermasCo- Chair.
• Vacancieswillbefilledasnecessary,asprovidedforinArticle5,Section3.Article10.ActivitiesoftheGPFAC
TheGPFACwillengageinthefollowingactivities:
• RepresentthepatientvoiceacrossMassGeneral,asrequested,andseekopportunitiestodo so.
• Providetargetedfeedbacktodepartments,services,programsandpracticesacrossMass General.
• Participateinavarietyofhospitalcommitteesandworkgroups,asawhole,andindividuallyasmembers.
• ProvideregularupdatestotheMGHleadershipandannualprogressreportstothe DepartmentofPublicHealth (DPH).
• PromoteawarenessandrecognitionofthefunctionsandimportanceofPFACsacrossthe hospital,system,andhealthcarecommunity.
Article11.OrientationandTraining
Section1.MassGeneralOrientationandTrainingAllselectedGPFACpatientandfamilyapplicantswillreceiveorientationandtrainingasto themissionandgoalsofMassGeneral,Trainingwillincludehospitalregulatoryandprivacy issues,andthroughthistraining,GPFACmemberswillcommittoadheringtoMGH guidelinesandHealthInsurancePortabilityandAccountabilityAct(HIPAA)standardsand guidelines.TheVolunteerDepartmentofMGHwillprovidetheMassGeneralorientation andtraining.
Section2.GPFACOrientationAllselectedGPFACpatientandfamilyapplicantswillreceiveorientationspecifictothe GPFAC,includingreviewofthebylaws.
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Article12.ConfidentialityGPFACmembersmustnotdiscussanypersonalorconfidentialinformationrevealedduring GPFACmeetingsoutsideoftheGPFACmeetings.GPFACmembersmustadheretoall applicableHIPAAstandardsandguidelines.Ifamemberviolatestheseguidelines,theCo- Chairswillremindthemoftheguidelines.Repeatedviolationsmayresultinrepeating HIPAAtrainingorreevaluationofmembershipstatus.
Article13.PFACMeetings
Meetingswillbeheldmonthly.Eachmeetingwillbe1to2hoursinlength.Section1.AgendaMeetingagendawillbesetbytheExecutiveCommitteeandwillbedistributedtothe membershippriortoeachmeeting,alongwithanypertinentmaterialsfordiscussionduring themeeting.
Section2.MeetingMinutesTheSecretarywilltakeminutesofeachGPFACmeetingandExecutiveCommitteemeeting. Councilminuteswillberetainedforaminimumof5years.
Section3.AttendanceItisexpectedthatthemembersoftheGPFACwillmakeeveryattempttoattendeachmeetingheld.Teleconferencecallinisacceptablewhenphysicalpresencecannotbeachieved.Participationbyeverymemberisexpected.Confirmationofattendanceis requestedforeachmeeting.Ifamemberisnotabletoattend3consecutivemeetings,theCo-chairswillcontactthemembertodiscusstheircommitmenttotheGPFAC.
Article14.Termination
TheGPFACExecutiveCommitteereservestherighttodismissanymemberwhothe committeedeemsnottobecompliantwiththeresponsibilitiesassetforthbythebylaws.
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Article15.BylawsThebylawsoftheGPFACshallbereviewedatleastevery3years.Thesebylawswillbe reviewedbytheExecutiveCommitteeoftheGPFAC,andacceptedviaavotingprocessin whichatleast75%ofthemembersoftheGPFACparticipate.Thebylawsmaybeamended asnecessarybythemembersoftheGPFAC,asstatedherein.
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MassGeneral Hospital for Children FACestablished 1999
“Guided by the needs of our patients and their families...”
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MassachusettsGeneralHospitalforChildren established 1999
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FACGoalsfor2018
• WorkwithhospitalleadershipandpersonneltoimprovetheprocessesthroughwhichpatientstransitionsfrompediatrictoadulthealthcareatMGHfCandMGH
• ContinuetousepatientstoriesanddrawfrompatientexperiencestoenhancepatientandstaffeducationatMGHfC
• EngagewithMGHfC’spatientexperienceworkgroups,byservingoncommitteesandcollaboratinginactivities,toenhancethepatientexperienceatMGHfC
• LearnmoreaboutandengagewiththePediatricPainService,toimprovepatientunderstandingofpainmanagementserviceatMGHfC
PresentationsandFeedback
• Dr.RonaldKleinman,MD(Physician-in-Chief,MGHfC)outlinedtheDepartmentofPediatricsstrategicgoalsfortheyearandheardaboutareasofpriorityforparents.
• MichaelPistiner,MD(DirectorofFoodAllergyAdvocacy,EducationandPreventionatMGHfC)presentedhisrecenteffortsandreceivedfeedbackabouthowparentsandpatientparticipationcouldenhancethatwork.
• DeborahWachenheim(DirectorofDisseminationatOpenNotes)discussedtheworkofthenon-profitwhosemissionistoenablepatientstohavemoreaccesstotheirmedicalrecords.
• ChristineGriffin(MGHDirectorofHealthInformationManagement/PrivacyOfficer)gaveapowerpointpresentationonthenewPartnersPatientGatewayaccesspolicyforadolescentsandtheirparentsaswellastheprocess
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bywhichpatientscanachieveawaiverfromthepolicy.FACparentsprovidedfeedbackaboutthedrawbacksofthepolicyintermsoflimitingaccesstoimportantmedicalinformation.
• RobinLipkis-OrlandoandJenniferRepper-DeLisifromtheOfficeofPatientAdvocacyvisitedFACtoexplaintheirrolesandtheprogramsthatarerunthroughtheiroffice.
• LizMover(MGHnurseintheMedicalICU)presentedonOperationHouseCall,runthroughTheArcofMassachusetts.Thisprogramenablesyoungmedicalprofessionalstovisitpatientsintheirhomesandteachesessentialskillstoenhancethehealthcareofpersonswithautismandotherintellectualanddevelopmentaldisabilities.
• SandraClancy(Co-ChairofFAC)askedFACmembersforfeedbackonamedicaleducationcollaborationbetweenMGHfCandClevelandClinic’sChildren’sHospital.TwohospitalteamsarecreatingcurriculatotrainresidentsinpediatricpalliativecareusingvideosfromtheCourageousParentsNetworkfeaturingparentsofchildrenwithseriousillnessdiscussingtheirhospitalexperiences.
PatientandStaffEducation
• FourFACparentscompletedvideointerviewsinwhichtheyarticulatedwhytheychoseMGHfCfortheirchild’scareandwhytheyserveontheFAC.MGHfCwebdevelopmentandmarketingpersonnelareintheprocessofmakingtheinterviewsavailableontheFACwebsite.
• TwoFACparentmemberscollaboratedwithSharonBadgettLichten(SeniorOrganizationalDevelopmentSpecialistinServiceExcellenceatMGHandMGPOPracticeImprovementDivision)todevelopandpresentthreestafftrainingsessions.Thesessions,hostedbytheMGHfCQualityandSafetyTeam,focusedonprovidingstaffwithskillsintheareasofcourtesyandhelpfulness.
• FACdevelopedandhostedaGrandRoundsincollaborationwiththreemembersofthePediatricRadiationOncologyTeam,afourteen-year-oldpatientandhisparents.TheGrandRoundsfeaturedtheMGHfCstaffdescribingtheirroleinthePeerMentorProgramwhichmatchespatientswhohaveundergoneprotonbeamradiationtherapywithoutsedationwith
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patientswhowishtodothesame.ThePeerMentorProgramwasdevelopedbyanurseinPediatricRadiationandthepatient.
• TwoMGHfCpatients(ages13and14),alongwiththeirparentswhoareFACmembers,spoketoincomingmedicalinternstoprovidetheirexperiencesofbedsiderounding.Theadolescentsnotedthattheyappreciatewhendoctorscallthembytheirnamesandincludethemindiscussionsabouttheirhealthcare.
FACParentsActivitiesThroughouttheHospital
• TwoFACparentsjoinedhiringcommitteesforNurseDirectorpositions.Theyparticipatedinassessingresumes,interviewingcandidatesandwritingreportstotheMGHNursingDirector.ThepositionswereforNurseDirectorofOB-GYNandNurseDirectorofEllison17and18.
• FACmembersattendedaJointPFACeventhostedbytheMGHPFACthatfeaturedapanelofpatientswhospokeabouttheirexperiencesatMGH.AFACparentmemberparticipatedonthepanel.
• FACstaffandparentsparticipatedintheEllison17and18Santa’sWorkshop,ahospitaltraditioninwhichparentsofpatientswhowillspendtheholidaysinthehospitalchoosegiftsforthemfromacollectiondisplayedonthewards.FACmemberswrappedthegiftsandinteractedwithparentswhowerechoosinggiftsfortheirchildren.
• SeveralparentmembersoftheFACmetinDecemberwithseveralmembersoftheMGHfCPediCancerCenterPFACtocollaborateonastatementforMGHfCLeadershiparoundtheneedforsingleroomsonthewards.
• InresponsetoarequestfromtheMGHfCResidencyProgramLeadership,FACparentsprovidedtheirperspectivesonthebenefitsofbedsiderounding.Thefeedbackwasincludedastheresidencyprogrammadechangestotheprocessofbedsiderounding.
• FourFACmembersformedacommitteetoworkwithMGHfCLeadershiptouseFACpatientstoriestoenhanceawarenessofanddifferentiateMGHfC.Theypresented‘UsingPatientStoriesandExperiencestoIncreaseAwareness
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andDifferentiatetheHospital’totheMGHfCExecutiveGroup.Aworkinggrouphasbeenformedtocarryoutthesuggestions.
• TwoFACparentsstaffedatableatthe2018NewInternMeetandGreetEventtointroduceFACanditsactivitiestoenteringinterns.
• FACparentscontinuedtopilota‘SecretShopper’formdevelopedbyMGHfCQualityandSafetyTeamthatallowsparentstofilloutanon-linepatientexperiencesurveyafterambulatoryvisits.Thesurveyresultsaresharedwithambulatorypracticeleadershiptohelptargetareasthatneedimprovement.
• SupportedDepartmentofNursing’ssuccessfulMagnetRedesignation
• FACPICUnurseEleanorMcLauglininitiatedthePICUAdolescentRoundingprojectthatwasinspiredbyherworkontheFAC.TheprojectoffersteensandyoungadultsinthePICUtheopportunitytotakepartinbedsiderounding.Theprojectwasincludedinthe2017MGHapplicationforMagnetNursingstatus.
ResearchFACwasinvitedbyElsieTaveras,MD(Chief,DivisionofGeneralAcademicPediatrics)towritealetterofsupportforhergrantproposaltitled“ImplementationofChildhoodObesityTreatmentInnovationstoImproveOutcomesofLow-IncomeChildren:TheConnectforHealthIIStudy.”FACparents’roleintheprojectwouldbetoinformtheproposedimplementation,toguideadaptionoffamilyeducationalmaterials,andtoprovidefeedbackonculturally-andfamily-orientedstrategiesandexperiencesthatwillbebeneficialtothesuccessofimplementation.
AwardsTheCo-ChairsoftheFACtraveledtoWashingtonDConNovember3,2017toattendaconferenceandawardceremonysponsoredbytheInstituteforPatientandFamilyCenteredCare.TheyreceivedaPartnershipAwardfor‘Wendy’sWelcome,’acartoonanimationvideothatintroducespediatricpatientstotheMGHfCEmergencyDepartment.Theawardrecognizesinnovativepartnershipsamongpatients,familiesandhealthcareprofessionals.
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MassachusettsGeneralHospitalforChildren FAC Members Parents/Patients StaffSetaAtamian SharonBadgett-LichtenLisaCimino BarbaraCashavellyDarcyDaniels(Co-Chair) MonicChardinMichaelDoiron SandraClancy(Co-Chair)CharleneHarper AnneFonsecaRoxanneHoke-Chandler KateGerneCindyMatuszewksi PeterGreenspan MatthewMcGuinness EstherIsraelEveMegargel KarenManningJaniceMorris JessicaMascolaElizabethMover SandraDodgeMcGee AlixNozzolillo AnneBouchardPizzano KelliPurchase AlexandraSobranErinQuinney KimberlyWhalenKathleenRufoRandiStemplerFaithWilcox
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FamilyAdvisoryCouncilCharter/By-laws
1. MissionStatement:
TheMassGeneralHospitalforChildren'sFamilyAdvisoryCouncil(FAC)isdedicatedtofosteringthepartnershipoffamilymembers,children,andprofessionalsworkingtogethertoensureaclimateofresponsivenesstotheneedsofchildrenandtheirfamilies.
2. Purpose:
2.1. WorktogetherwiththeadministrationandstaffofMassGeneralHospitalforChildren(MGHfC)topromotefamily-centeredcare;
2.2. CollaboratewiththeMGHfCstaffinimprovingthequalityofhealthcareprovidedtochildrenandtheirfamiliesinbothinpatientandoutpatientsettings;
2.3. Fosterengagementamongpatients,familiesandprofessionals;2.4. ActasanadvisoryresourcetoMGHfCleadershiponissuesofplanning,
equipment,evaluationofprogramsandservices,policiesandnewfacilities;2.5. ActasanadvisoryresourcetoMGHfCgivinginputtoteachingdocuments
generatedbythehospitalregardingfamilies;2.6. PromoteapositiverelationshipbetweenMGHfCandthecommunity;2.7. ContributetotheeducationalprocessofprofessionalsatMGHfC.
3. MembershipCommittee:
3.1. MembersoftheMembershipCommitteewillbeappointedbytheMGHfCAssociateChief,DepartmentofPediatrics;
3.2. TheMembershipCommitteewillconsistofthreecurrentFACfamilymembersandtwoMGHfCstaffmembers;
3.3. MembersoftheMembershipCommitteewilltrackfamilymembershipandactivelyrecruitnewfamilymembers.
4. Membership:
4.1. FamilymembershipisbyapplicationtotheMembershipCommittee;4.2. Familymembershipconsistsofuptotwenty-onepeoplewhosechildrenhave
receivedcareatMGHfCorarepatientssixteenyearsorolderwhohavereceivedcareatMGHfC;
4.3. TherewillbeonestaffCo-ChairandonefamilyCo-Chair;
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4.4. TheMGHfC‘sMedicalDirector,AssociateChiefNurseofPediatrics,ExecutiveDirector,andInpatientDirectorofQualityandSafetywillbeex-officiomembers;
4.5. TheMGHfCInpatientDirectorofQualityandSafetywillbeallowedtovoteintimeswhereatie-breakingvoteisrequired.
4.6. TheMGHfCwillhavefourrotatingstaffmembersoftheCouncil;4.7. OtherMGHfCstaffwillattendmeetingsasneededgiventheCouncil’sgoalsand
receivemeetingminutesapprovedbytheCounciltohaveknowledgeregardingtheagendaandon-goingwork.
5. FamilyMembership:
5.1. EachSeptembertheCo-ChairswillcontactthefamilymembersofFACtoensuretheywillbeabletocarryouttheirresponsibilitiesforthecomingyear:
5.2. ThefamilyCo-ChairofFACwillserveatwo-yearterm;5.3. AnyCouncilmemberthatmissesfourconsecutivemeetingswillbecontactedby
theCouncilCo-Chairstodeterminewhethertheywillbeabletocontinuetoserve;
5.4. IfaCouncilmembercannotfulfillhis/hercommitmenttotheCouncil,theycanresigninwriting.
6. MembershipResponsibilities:6.1. ParticipateintheformationandevaluationofFACyearlygoalsandobjectives
andbeanactiveparticipantinCouncilactivities;6.2. Prepareforandattendmeetings;6.3. Beanadvocateforallpatientsandfamiliesbyidentifyingandrepresentingtheir
needsandconcerns;6.4. MaintainpatientconfidentialityaccordingtoHIPPAguidelinesatalltimes;6.5. ConsiderservingonotherMGHfCcommitteeswhenrequested;6.6. SupporttheMGHfCpublicly;6.7. NotifytheCo-Chairsifunabletoattendmeetings;6.8. Forfamilymembers,agreetoundertakeMGHVolunteerDepartment
orientationandbecomeandofficialMGHVolunteer;6.9. MGHfCstaffmemberswillactasthehospitalliaisonstotheCouncil.
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7. Co-ChairResponsibilities:7.1. EstablishgoalsandobjectivesoftheCouncilwiththemembershipannually;7.2. CompleteanannualprogressreporttobesubmittedtotheChiefofService,
DepartmentofPediatrics;ChiefofPediatricSurgery;Vice-PresidentofPediatrics;andChiefNurse,MGH;
7.3. Setmeetingagendasandschedules;7.4. RepresentthegoalsandobjectivesoftheFACwithanycorrespondence
approvedbythemembershipwithhospitaladministrationandstaff;7.5. Appointsubcommitteechairs,whowillberesponsiblefor:
- updatesofthesubcommitteeworktotheCouncilatregularintervals;- goalsandobjectivesforthesubcommittee;- annualreportsofthesubcommittee;
7.6 LiaisonwithsixPatientandFamilyAdvisoryCouncilsatMGHandrepresenttheworkoftheFAC.
8. MassGeneralHospitalforChildrenResponsibilities:
8.1. WorkcollaborativelywiththeFACtopromotethebestpossiblefamily-centeredpracticeattheMGHfC;
8.2. WorktogetherwiththeFACinpolicy-making,planningandevaluatingofprogramsandservices;
8.3. ReviewandrespondtorecommendationsoftheFACinatimelymanner;8.4. OffernewmemberorientationtotheMGHfCstructure,decision-making
process,committeestructure,andHIPPAregulations;8.5. Providemeetingspaceandrefreshments;8.6. ProvidefreeparkingforFACmeetingsandworkinhospital;8.7. ProvidefinancialsupportforapprovedFACactivitiesbasedonsubmitted
proposals.8.8. Providestaffsupportpersonto:
- takemeetingminutes;- notifymembersofupcomingmeetingswithagendas;- distributemeetingminutestotheCouncilandothersonthedistributionlist;- keeptheFACdistributionlistuptodate;
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9. Quorum:9.1. Forvoting,aquorumrepresentsatleast7members,oneofwhommustbea
staffmember,andtwomoreparentmembersthanstaffmembersareneededforanyvotetobeofficial.Ifthereisnotaquorumatameeting,thevotewillbetakenviaemailandthevotesofeightfamilymembersarerequiredforthevotetobeofficial.
10. Amendments:10.1TheprocesstoamendtheFACBy-Lawsisasfollows:
- Councilmembersubmitssuggestedrevisioninwriting.- RevisionsaresentouttomembersanddiscussedataCouncilmeeting.
10.2TheCouncilwillvoteontheamendmentsandapprovethroughmajorityvote.
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“Guided by the needs of our patients and their families...”
MGH Cancer Center PFACestablished 2001
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MGH CANCER CENTER established 2001
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MissionThemissionoftheMassGeneralCancerCenterPatientandFamilyAdvisoryCouncilistoensurethatthevoicesofpatientsandfamiliesarerepresentedinanefforttoenhancetheirentireexperienceattheMassachusettsGeneralHospitalCancerCenter.ObjectivesAsanadvisorycounciltoCancerCenteradministrationandstaff,theCCPFAC’sprimaryobjectivesaretopromoteandsupportpatientandfamily-centeredcare,toprovideeducationonthepatientandfamilyexperience,andtoexpandthevoiceofpatientsandfamiliesthroughouttheMassachusettsGeneralHospitalbyparticipatinginhospitalwidecommitteesandengagingwithotherpatientandfamilyadvisorycouncils.TheCancerCenterPFAChasanongoingcommitmenttomeettheseobjectivesbyadvisingCancerCenterleadershiponimportantinitiativessuchasspaceplanning,communicationstopatientsandfamilies,programdevelopment,theCancerCenter’songoingevaluationofthequalityofcareandotherimportantinitiatives.CouncilOperationsTheCCPFACmeetsonthesecondWednesdayofeachmonthfrom5:30-7:30PM.Meetingminutesandmaterialsarestoredelectronicallyforatleastfiveyears.Councilminutesandasummaryofthecouncil’saccomplishmentsareprovidedtothehospital’sgoverningbody.
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MembershipTheCCPFACcurrentlyconsistsof26activemembers,15alumnimembers,and8staffmembers.Membersrepresentdiverseperspectivesanddiversityinage,gender,diagnosis,treatmenthistory,race/culture,andsocioeconomicstatus.CurrentmembersrepresentatleasttendifferentCancerCenterdiseaseprograms,aswellastwodifferentsites(Boston/MainCampusandMassGeneral/NorthShoreCancerCenterinDanvers).StaffmembersoftheCCPFACincludetheCancerCenterExecutiveDirector,CancerCenterNurseDirectorofAmbulatoryOncologyClinicalServices,CancerCenterDirectorofCommunications,MarketingandEducation,anOncologySocialWorker,threeproject/programmanagers,andamedicaloncologist.QualificationsforMembershipToserveontheCCPFAC,patientsandfamilymembersmusthavearecenthistoryofreceivingcancercareattheMassGeneralHospitalCancerCenter.Theymustbeabletousetheirownindividualcancerexperienceinanobjectivewaysothattheycanaskquestionsandofferaperspectivethatcouldbeapplicabletomanypatientsandfamilieslivingwithcancer.Theymustpossessgoodlisteningskillsandbeabletoworkcollaborativelywithothers.CCPFACmembersareaskedtocommittoattendingmonthlyCCPFACmeetingsaswellasservingoncommitteesthroughouttheCancerCenterandMGH,aswellasCCPFACsubcommittees.Membersareaskedtomakeatwotofour-yearcommitment.AlumnimembershavetheoptiontoremaininvolvedbyattendingselectCCPFACactivities,ifavailable,butdonotattendthemonthlycouncilmeetings.MembershipRequirementsandTrainingCCPFACmembersarerequiredtomeetMassGeneralvolunteerstandardswhichincludethecompletionofHIPAAtrainingandannualsigningoftheMGHconfidentialitystatement.CCPFACmembersplayanactiveroleinorientingnewmembers.Membersserveas“buddies”tonewmembersandprovidepeermentoringontherole.NewmembersarealsoencouragedtoattendCancerCenternewstafforientationaswell.Ongoingeducationisprovidedthroughouttheyearbyinvitedstaffwhopresentonavarietyoftopicssuchascancersurvivorshipprogramming,qualityofcare,supportivecareresourcesandchangesinclinicalcare.
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PFACMemberRecruitmentProspectivemembersarenominatedbyCancerCenterphysicians,stafforcurrentCCPFACmemberswiththepatientorfamilymember’spermission.NomineesareaskedtocompleteanapplicationwhichisreviewedbyaCCPFACstaffmemberpriortoaninterviewwithselectcandidates.CCPFACstaffselectsnewCCPFACmemberswithagoalofhavingadiversemembershiprepresentingtheculturalandsocioeconomicdiversityofCancerCenterpatientsandavarietyofcancerdiagnosesandtreatments.CCPFACLeadershipBychoice,theCCPFAChasnoformalchairorelectedofficers.CurrentlythemeetingsarefacilitatedbyCancerCenterleadership.AgendaitemsareprioritizedbystaffmembersbasedontopicsdiscussedatCCPFACmeetingsandrequestsfromCancerCenterandMGH-widestaffthatwishtoconsultthecouncil.RolesandActivitiesInadditiontotheirattendanceatmonthlyCCPFACmeetings,membersarealsoaskedtoserveonCancerCenterandMassGeneralsteeringandreviewcommittees.CommitteesonwhichCCPFACmembershaveservedincludethePatientExperienceCouncil,CareRedesignProjects,QualityandSafetyCommittee,PatientEducationandCommunicationsSubcommittee,andSurvivorshipDay.CCPFACmembershaveparticipatedintheinterviewprocessforoncologynursingleaders,thereviewofpatientsatisfactionandqualitydata,andthedesignofprogrammingandpatienteducationefforts.TheyhavealsobeeninvolvedinCancerCenterinitiativestoimproveclinicaloperationssuchasfeedbackonnewnursingcommunicationdevices,thedesignofnewclinicalunits,andprojectstoimprovewaittimesandworkflow.MembersalsoserveinaneducationalcapacitybyprovidingCancerCenterstaffwithaforumtodiscusspatient/familymemberperspectivesandtoaddressstrategiesonhowtoaddressdifferentinteractionsacrossthecontinuumofcare.Residentsandfellows,supportstaffandnursingstaffhaveallparticipatedinthesesessions.
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2017-18ActivitiesandAccomplishmentsThePFAChashadmanyaccomplishmentsoverthepastyear.Eachyear,PFACmembersaresurveyedtoidentifytheirgoalsandprioritiesasadvisorstotheCancerCenter.Thisyear,thecommitteeprioritizedthefollowingobjectives:
• EnhancecommunicationtopatientsandfamiliesaboutCancerCenterprogrammingandresources
• Minimizedelaysandincreaseefficiencyofpatientcare• Improvesurvivorshipprogramming
TheaccomplishmentsbelowrepresentareasthatdemonstratetheimpactofthePFAContheCancerCenter’spatientexperience,inaccordancewiththegoalsmentionedabove:
• Quality,SafetyandValueintheCancerCenter-ThereseM.Mulvey,MDandMegSoriano,RNpresentedontherobustsafetycultureintheCancerCenterandnewinitiativestargetedatimprovingthequalityofcareprovidedtopatients.PatientReportedOutcomeMeasures(PROMs)measurehealthfromthepatientperspectivethroughanEpicquestionnairepresentedonaniPadatcheck-in.Thecommitteediscussedthepositiveimpactthiscouldhaveoncaringforthewholepatientandmanagingsymptomsandissues.
• Telemedicine-BenjaminMellerandKaitlinBilodeaufromtheMGH/MGPO
CenterforTeleHealthprovidedanoverviewofthehistoryoftelemedicineatMGHandtherapidlyexpandingscopeofpracticewithinthedepartment.AstelehealthexpandsintotheCancerCenter,PFACmembersgavefeedbackonthetypesofvisitsappropriatetotelemedicineandwhichareimportanttoremaininperson.Therewasconversationrelatedtotherelationshipformedbetweenapatientandtheirentirehealthcareteamandhowitcouldbealteredbytheintroductionoftelemedicine.
• DistressScreening-JosephGreer,PhD,LourdesBarros,LICSWandCarlos
Fernandez-Robles,MDdiscussedtheCancerCenter’splantoimplementdistressscreeninginoutpatientoncologypractices.Theypresentedaplanto
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regularlyscreenpatientsforpsychosocialdistressutilizinganEpicquestionnairedevelopedtoidentifypatientsthatmayneedadditionalsupportanddirectthemtoavailableresources.
• VirtualSupportGroups-JustinJordan,MDpresentedonapilotprogramtomakesupportgroupsmoreaccessibletoallpatientpopulationsbyexpandingtoanelectronicplatform.Thisinitiativewasaresultofthe2017CancerCenterEtherDomeChallengeinwhichPFACmemberswereactiveparticipants.Thecommitteesharedtheirexperiencewithsupportgroupsandgaveinsightfulfeedbacktothechallengesanticipatedwithmovingtoremoteattendance.Therewasameaningfuldiscussionabouttheemotionaltiesthatformwithinthesupportgroupsettingsandadviceonhowtocultivatethesamedynamicinavirtualspace.
• MITProjectUpdates-BethSouzareturnedtoPFACtoprovideanupdateontheMGH/MITcollaborativescheduleoptimizationprogram(OptIn)designedtoreducepatientdelaysinInfusion.Inapreviousmeeting,PFACmemberswereaskedforfeedbackonbestmethodstocommunicatethisnewchangetoourpatientsandaskedtheirthoughts/concernswiththenewprocess.Thisupdateshowedhowoverasix-monthperiod,theinfusionunitcapacityhasincreasedtoaccommodatemorepatientsinamoreefficientmanner.
• ColdCap-StevenIsakoff,MDpresenteddetailsonthenewlyapprovedscalpcoolingtechnologiesandhisongoingworktobringascalpcoolingprogramtotheCancerCenter.ColdCaptherapyaimstominimizechemotherapy-inducedhairlossbyreducingbloodflowtothehairfollicle.PFACmemberswereveryinvolvedingivingfeedbackontheirownexperiencewithhairlossthroughouttreatmentandprovidedinsightintothelackofcontrolassociatedwithchemotherapy-inducedalopecia.
• UnderstandingImmunotherapySideEffects-KerryReynolds,MDandAlexandra-ChloéVillani,PhDwerejoinedbythefamiliesofformerpatientstofacilitateameaningfulandemotionaldiscussionregardingthecomplicationsassociatedwithimmunotherapiesandhowMGHispartneringacrossdepartmentsanddivisionstohelpmanagecomplicationsandsideeffects.The
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familiessharedtheirexperiencenavigatingthecomplicationsassociatedwithimmunotherapy,andDr.Reynoldssoughtfeedbackfromthecommitteeonhowtobestcommunicateseveretoxicitytopatients.
• SmokefreeSupportServices-ElysePark,IrinaGonzalezandLauraMalloyreviewedthesmokingcessationservicesavailabletooncologypatients.TheMassGeneralCancerCenterSmokefreeSupportServiceprovidesfree,phone-based,one-on-onequit-smokingcounselingforallMGHCancerCenterpatients.
• CellularTherapyService-MatthewFrigault,MDpresentedontherapidlygrowingcellulartherapy(CAR-T)servicewithintheCancerCenterandthevariousclinicaltrialsofferedatMGH.Cellulartherapyisanewformoftreatmentinwhichapatient’scellsareextractedandgeneticallyengineeredtoidentifyandtargetcancers.Dr.Frigaultfacilitatedacollaborativediscussiononhownewresearchandtechnologiesareinfluencingthewayclinicianscareforpatientswhiletheyundergotreatmentandmovingforward.
• Chaplaincy:Spirituality&Mindfulness-KatrinaScottreviewedthevariousservicesofferedtopatientsfromtheChaplaincyprogramatMGH.Patientsareprovidedwithspiritualcareforalltraditions,religionsandculturalbeliefs.Inaninformal“askthechaplain”forum,thecommitteeandKatrinadiscussedthebenefitschaplaincyinvolvementcanofferpatientsandfamiliesinadditiontotheversatileexercisesusedtoapproachspiritualityatMGH.
• WalthamRadiologyExpansionProject-JeremyHerringtonfromtheDepartmentofRadiologypresentedontheongoingeffortstoexpandavailableservicesofferedintheWalthamlocation.Theexpansionplanwillincreasetheavailabilityofcurrentimagingservicesofferedandintroducestandardinterventionalradiologyprocedurestothelocation.PFACmemberswereaskedabouttheirexperiencewithradiologyacrosslocationsandprovidedadviceonwhatadditionalservicesbestserveoncologypatients.
• CancerCenterUpdates-MaraBloom,ExecutiveDirector,MGHCancerCenterprovidedanupdateonCancerCentergrowthstrategies,internationalpartnershipsandtheongoingeffortstodevelopasupportivecareprogram.As
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theCancerCenterlooksforward,thereisafocusonaligningstrategieswiththepatientexperienceandprovidingcarethatsupportsallpatientneeds.
• OverviewofOncologyResources-EllenForman,LICSW,GretaGaeta,LSW
andPatrinaJacobupdatedPFAConthevariousresourcesaccessibleforpatientsintheCancerCenterandtheappropriatepathwaysfornavigatingpatientstoavailablesupport.ThepresenterswereinterestedinfeedbackfromPFACmembersonhowtoraiseawarenessoftheseresourcesandthebestwayandtimetocommunicatewithpatients.
• PatientAccessInitiatives-CourtneyMcLeishpresentedongoingCancer
Centerinitiativestoimprovethepatientexperienceandincreasetheaccessibilityofboththeadministrativeandclinicalteams.Theseincludeprovidingnextdaynewpatientaccess,decentralizingthecallcentertodeliveronetouchresolutionforroutineadministrativeconcernsandrestructuringtheafter-hourspatientcallservice.TherewasalivelydiscussiononthevariouswayspatientsinteractwiththeCancerCenterandhowadministrationcanhelpprovideaconsistentpatientexperiencethrougheachavailablepointofcontact.
• RoleofNursingintheCancerCenter-ErikaRosato,NursingDirectorof
AmbulatoryOncologyClinicalServicesandKellyAnnJeffries,NursingDirectorofAdvancedPracticeCliniciansprovidedanoverviewoftheCancerCentercollaborativeandintegratednursingleadershipstructurethatreachesacrossthecontinuumofcare.PFACmemberssharedtheirexperiencesinteractingwithnursingandtheprominentroleoncologynursestakeinthecareofthepatient.
• Conferences:AspartofitsmissiontoeducateothersaboutthevalueandroleofPFACs,membersparticipatedinseveralexternalforums.DuringFY2018,membersparticipatedinthefollowingforums:
o MGHAnnualJointPFACMeeting-November2017o TheWorldInnovationsForum-April2018o 2018SurvivorshipConference:OwnYourStory:CreatingMeaningfromYourCancerExperience-June2018
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• CommitteeandSubcommitteeParticipation:PFACmembersalsoparticipateinavarietyofCancerCentercommitteesandsubcommittees.ThisensuresthatthepatientandfamilymemberperspectiveiswellintegratedintothefabricoftheCancerCenter.PFACrepresentativesonthesecommitteesprovideperiodicupdatesduringthemonthlycouncilmeetings.PFACmembersparticipatedinthefollowingcommitteesduringFY2018:
o PFACTaskForceonEnhancingPatientConnectiontoCancerCenter
SupportiveCareResourceso CancerCenterQuality&SafetyCommittee
LookingForwardAsFY19begins,manyofthecommitteesandactivitieslistedabovewillcontinue.CancerCenterstaffandleadershipseekouttheopinionsandperspectivesofCCPFACmembersasstaffareincreasinglyawareofPFAC’sdiversityofexperienceandperspectivesthatcanmakeanexcellentinitiativeorprogramevenbetter.CCPFACmembersalsocontributetotheMassGeneralCancerCommunityinformationlearned,frompersonalexperienceoractivelearningandparticipation,toguidetheCancerCenterinnewdirectionstocontinuallyimprovethepatientexperience.
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“Guided by the needs of our patients and their families...”
Pediatric Oncology FACestablished 2003
February 1, 2018 — Caring Headlines — Page 7
The Voice of the Patient
patient-family advisory
councils (PFACs) came
together, November
14, 2017, in O’Keeffe Auditorium to celebrate the
voices of patients and families and highlight their
contributions to enhancing the care experience.
Founder and executive director of Health Story
Collaborative, Annie Brewster, MD, facilitated
two panel discussions, demonstrating the power of
storytelling to effect change.
Said senior vice president for Performance Im-
provement and Service Excel lence, Inga Lennes, MD,
“Stories are the things that motivate us. They fuel
change. Our PFAC members have amazing stories
that inform our efforts to advance our mission.”
Former senior vice president for Patient Care, Jeanette Ives Erickson, RN,
thanked PFAC members for, “the incredible work that is happening because of
your commitment to advise and improve the care we deliver.” She cited exam-
ples of their input into key initiatives, designing new buildings and services,
developing educational programs, and participating on hospital committees.
Ives Erickson introduced her successor, Debbie Burke, RN, who’s been a mem-
ber of the Cancer Center PFAC and the Pediatric Oncology FAC for years.
Said Burke, “We’re going to need your help in the years ahead to remind us
of what’s most impor tant — you and your families.”
One panel focused on the unique relationship between patient, provider,
and parent through the accounts of Tarrah Zedower, of the Pediatric Onc ol ogy
FAC, and Howard Weinstein, MD, chief of Pediatric Oncology. Together,
they told the powerful story of one care journey and the importance of trust
and partnership.
Another panel, comprised of members of the other six PFACs, shared sto-
ries of coping with medical conditions, finding
strength in the patient-family-provider relationship,
and contributing to hospital efforts to improve the
care experience. Matt Reid, General PFAC; Paul
O’Leary, Ambulatory Practice of the Future Care
Alliance; Darcy Daniels, Pediatric FAC; Michael
Bider, Heart and Vascular Center PFAC; Ann
Buckley, Cancer Center PFAC; and Kim Nunnari,
Cystic Fibrosis PFAC, all shared stories.
Said Reid, “When I was in the room with people
who run that department, they took me seriously.
They listened in terms of me representing myself as
a person, as a patient, and then representing other
patients. It felt amazing to be able to have that
voice... That speaks volumes about the culture that
has been created here.”
For more information about patient-family advi-
sory councils, contact Liza Nyeko at 617-643-5484.
Patient-family advisory
councils come together— by Liza Nyeko, Office of Patient Experience/MGH Center for Quality & Safety
MGH(P
hoto
by
Kate
Flo
ck)
Panelists, Tarrah Zedower, of the Pediatric Onc ol ogy FAC, and Howard Weinstein, MD,
chief of Pediatric Oncology, share their journey together.
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PediatricOncologyFAC established 2003
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ThePediatricOncologyFamilyAdvisoryCommittee(FAC)hascontinuedtoremainintegraltothePediatricOncologyclinicalservice,providinginputaroundclinicalpractice,programplanningandpatientsafety.Thishasbeenalongstandingactivegroupsince2003withachangingmembershiptoreflecttheneedsoftheparentsandthepractice.Parentsofchildrenreceivingcancertreatmentandparentsofthosechildrenwhohavecompletedtreatmentjoinwithmembersofthemultidisciplinaryteamofclinicalprofessionalstocollaboratewiththecommongoalofprovidingexcellenceinpediatricfamilycenteredoncologycareandenhancingthepatientandfamily’sexperience.OBJECTIVES
• Buildaconsistentandcommittedmembershipo Continueavigorousrecruitmentprocessincludingpromotingdiversityamongstmembers.
o DevelopanorientationprogramincollaborationwithMassGeneral’sVolunteerServicesprogramforallmembersjoiningtheCommittee.
o IncreaseawarenessofthevalueoftheFamilyAdvisoryCommittee’srolewithintheclinic’soperationsandprograms.
o EnhancetheAdvisoryCommitteemember’sroleasachangeagentwithinthepractice.
• CollaboratewithotherPFAC’sandintegrateintotheinfrastructureofAdvisoryCommitteesatMassGeneral
o Co-Chairperson(MassGeneralstaffmember)willattendChairpersonsCouncil.
o FamilyAdvisoryCommitteememberswillhavetheopportunitytoparticipateinprofessionalconferenceswithintheregionforeducationandcollaboration.
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• Documentinitiativesandsuccessestoorganizationalleadershipo Provideperiodicreportstopracticeleadership.o Compileayearlyreportdetailingannualactivities.o PromotenewprogramsandsuccessesinMassGeneralpublicationsthroughouttheyear.
o Identifyopportunitiesforcollectingadditionaldataforevaluationandaction.
ThePediatricOncologyFACholdsmeetingsfivetimesannuallywithadditionalmeetingsscheduledwhenthegrouporsubgroupisworkingonaspecificproject.Thereisaclearunderstandingofthecompetingdemandsoffamilieswhenachildhascancer–includingtheneedsofotherchildreninthefamily,work,andrequirementsoftreatmentforthesickchild.AllofthesefactorswillimpacttheabilityofaparenttoattendinpersonmeetingsoftheAdvisoryCommittee.OpportunitiestocallintomeetingsorFacetimehavebeenmadeavailabletomembers,sotoofferflexibilityandpromotemembers’inclusioninthegroup.Thisyearthegrouphonored3membersoftheCommitteewhodeparted,twoaftermanyyearsofservice.Subsequently,theFamilyAdvisoryCommitteealsowelcomedtwonewparentstothegroupwhobroughtwiththemvaluableexperienceandperspectivesrelatedtotheirchild’scareinthepractice.Clinicalstaffparticipationremainedconstant.
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ActivitiesandIssues
• FamilyAdvisoryCommitteemembershostedalunchinthePediatricOncologyClinicforpatientsandfamiliesinhonorofNationalChildhoodCancerAwarenessmonth.InformationaboutchildhoodcancerandclinicprogramswasavailablealongwithgoldshoelacesdonatedbyGo4theGoalforallthechildren.AdvisoryCommitteeparentsmetwithnewerfamiliesforcamaraderieandsupport.
• PediatricOncologyFACmembersjoinedwiththeotherMGHPFAC’sforTheVoiceofMassGeneralPFAC’s,ajointprogramofalltheMGHAdvisoryCommittees.FeaturedspeakerswereTarrahZedower,memberofourFACalongwithDr.HowardWeinstein,ChiefofPediatricOncologywhosharedtheirstoriesaboutthepartnershipbetweenpatient/family/providerinachild’scancerjourney.
• InearlyDecember2017,theFACmetwithEmergencyDepartmentLeadershiptoreviewtheinitiativestheEDhastakentoimprovethepatientandfamilyexperienceforPediatricOncologyfamilies.ThismeetingwaspartofthecontinuingdialoguebetweenfamiliesandEDstafftoaddressthechallengeschildrenexperiencedaroundport-a-cathaccessintheED.Asresultofthesediscussions,standardsofnursingpracticehavebeenestablishedintheED,newprotocolsestablishedforaccessingassistancefrominpatientnursingifneeded,andeffortstoimprovethecompetenciesandcomfortofthenursingstaffwithpediatricportaccess.
• PediatricOncologyFACmembershelpedstaffdevelopaninformationsheetforfamiliestoaddressissuesofschedulingappointments,importanceoftimelyarrivalandtheimpactontheclinicoperations.FACmembersreviewedthecontentandmessagingbeforedistributiontofamiliesofchildrenreceivingcareintheclinic.
• PetTherapystartedinthePediatricOncologyoutpatientclinicinFebruary2018.ThiswastheresultofanintensiveinitiativebymembersoftheFACadvocatingfortheinclusionoftheprogramwiththeclinicpractice.TherewasongoingcollaborationwithMGHVolunteerServicestobringthisprogramtofruition.PediatricOncologybecamethe1stoutpatientservicetoofferPetTherapy.Ithasproventobeanenormouslypopularandsuccessfulprogram.
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• AsubgroupofPediatricFACmembersjoinedwithagroupfromtheMassGeneralHospitalforChildren’sFACtodevelopapositionstatementabouttheneedforprivateroomsontheinpatientPediatricservice.Thegroupdetailedalistofchallengeswhenchildrenmustsharerooms,whichwassubmittedtoDr.RonaldKleinman,ChiefofPediatricsatMassGeneralHospitalforChildren.Asexpansionofhospitalinpatientbedsisbeingaddressedthroughnewbuildingandre-allocationofresources,thegroupfeltthatitwastimelytoarticulatetheirposition.
• MichaelDoiron,amemberoftheFAC,attendedACCOChildren’sCancerAssociationAdvocacyDaysinWashingtonDCwithsupportoftheFACandPediatricOncology.MikemetwiththestaffofhislocallegislaturestolobbyforthepassageoftheSTARAct,TheChildhoodCancerSurvivorship,Treatment,AccessandResearchActandparticipatedinadvocacyactivitiesthroughoutthetwo-dayprogram.HesharedtheinspirationhegainedfromhisparticipationwithourFACatasubsequentmeeting.
• TheParenttoParentPOPSprogramcontinuestobeevaluatedwiththeFamilyAdvisoryCommittee.TheFACreviewedobstaclesforengagingparentsatvariouspointsinachild’streatment,anddiscussedstrategiestopromotetheprogram.Movingthisprogramtoanonlineportalthatissecurewillcontinuetobediscussedasanextstepinadvancingfamilyparticipation.
• TheFACcontinuesoversightofthetrackingofPatientExperienceDataandoffersinputforclinicalandoperationalimprovements.
• PediatricOncologyFACmembersprovideregularfeedbackaboutprogramsheld.Thegroupalsoaddressesthedevelopmentofnewpsychosocialcareprogramsforfamilysupport,educationandcreatingconnectionsbetweenfamiliesduringtheirchild’scancertreatment.Buildingopportunitiesforlinkagesandsupportarecentralthevalueofservicesoffered.
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PediatricOncologyFamilyAdvisoryCommitteeMembership
Co-ChairsDawnRegan,FACParent
ElyseLevin-Russman,LICSW,OSW-C,ClinicalSocialWorker
ParentMembersClaudiaCardonaMaryCincottaSusanJacobsonMaryKoperskiPaulaMarshallPeterPalamidisJerrySchindlerJaniceTheriaqueTarrahZedower
StaffMembersMaryHuang,MD
PediatricOncologist
HeidiJupp,RN,CPONPediatricOncologyNurse
EllenSilvius,RN,BSN
AmbulatoryNurseManager
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PediatricOncologyBylaws
OverviewIn2003,theMassachusettsGeneralHospitalforChildren’sCancerCenterlaunchedits’initialAdvisoryCommittee.Parentsofchildrenbothcurrentlyreceivingcancertreatment,aswellasparentsofchildrenwhohadcompletedtreatmentjoinedwithamultidisciplinaryteamofpediatriconcologyproviderstodevelopaframeworkforcollaborationtoinformclinicoperationsandprogramdevelopment.Thecommitteequicklybecameanimportantvoiceinmeetingthecenter’sexpressedgoalofprovidingfamilycenteredcare.Sinceits’inception,theFamilyAdvisoryCommitteehasseenchangesinmembership,asparentstypicallymoveofftheCommitteeafterseveralyearsofservice.ThishasaffordedtheCommitteetheopportunitytomoveforwardwithnewinputwhilebuildinguponpastaccomplishments.MissionStatement:MassachusettsGeneralHospitalforChildren’sCancerCenterFamilyAdvisoryCommittee(FAC)iscommittedtofosteringapartnershipbetweenfamiliesandcaregiverstopromoteexcellenceinthecareofchildrenwithcancer.
Purpose
• Parents,patientsandhealthcareprovidersworktogethertoimprovethequalityofcareforchildrenandtheirfamiliesduringandaftercancertreatment.
• PromoteFamilyCenteredCareasacentralprinciplewithinthePediatricOncologypractice.
• Optimizethepatientandfamilyexperience.• Provideguidanceandinputonfamilyeducationandthedevelopmentof
resourcestosupportpatientsandfamilies.• Actasanadvisoryresourceonissuesofplanningandevaluationof
programs,servicesandclinicoperations.• Contributetoinsuringthatthephysicalenvironmentoftheclinicalareasare
responsivetotheneedsofchildrenandtheirfamilies.
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MembershipThegoalofmembershipistohave75%ofallcommitteemembersbeparentsofpatientseithercurrentlyintreatmentforcancer,orthosewhohavecompletedtreatment.TheremainderofthemembershipwillincludemembersofthePediatricOncologyhealthcareteam.Currentlythereare14membersoftheFamilyAdvisoryCommittee–10parentsand4clinicalstaff.ThecliniciansaretheClinicalSocialWorkerasco-chairperson,aPediatricOncologist,aPediatricNurseandtheAmbulatoryNurseManager.OtherMGHPediatricOncologystaffmayattendaFACmeetingasneeded.AdolescentsandyoungadultscaredforwithinthePediatricOncologypracticewillbeinvitedtoparticipateintheFACasneeded.Specificallypatientswillbeincludedasadhoccommitteemembers,servingassubjectexpertsandadvisorsonprojectsandnewprogramdevelopment.
MembershipQualifications
• TherewillbeanopenenrollmentprocessforparticipationintheFamilyAdvisoryCommittee.ParentswhoareinterestedinjoiningshouldspeakwiththeClinicalSocialWorkerwhocanprovideinformationabouttheCommittee.Additionally,parentscanberecommendedbystaffforparticipation.Inthosecases,theClinicalSocialWorkerwillcontacttheidentifiedfamilymembertodiscussmembershipintheFAC.InformationabouttheCommitteewillremainavailableinthePediatricOncologywaitingarea.
• ParentsshouldhaveachildcurrentlyintreatmentorbefollowedinthePediatricOncologypracticeforongoingfollowupcare.
• Individualsparticipatingshouldpossesstheabilitytorepresenttheperspectiveofthepatientsandfamilymembersandbeabletoconsiderissuesbeyondone’sownchild’scancerexperience.
• Abilitytoworkcollaborativelyamongstateamofparentsandclinicalstaffmembers.
• Abilitytomakeatimecommitmentformeetingsandspecialprojects,astheyarise.
• Representdiverseperspectivesandbackgroundssoastoreflecttheclinic’spopulation.
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MembershipTerms/Responsibilities:
• Memberswillbeexpectedtomakeatwo-yearcommitmentwiththeoptiontorenewafterthattime.
• Nospecifictermlimitshavebeenset.• Meetingswillbeheldaminimumoffivetimesannually,withaschedule
providedatthebeginningofeachyear.Meetingsareheldonaworkdayeveningfrom6:30-8:30PM.Thedayoftheweekisrotatedtoaccommodatethevariedschedulesofparentmembers.
• Additionalmeetings,eitherinpersonorviaconferencecalls,maybeaddedtoaddressspecialprojectsorinputfromtheCommitteethatneedstobeobtainedbeforethenextscheduledmeeting.
• Memberswillnotifyonetheco-chairsifunabletoattendameeting.• Membersareexpectedtoparticipateineachmeeting,andmakea
reasonableattempttoparticipateinmeetingsoutsidetheusualschedule.• ParticipateinMGHPediatricOncologycommunityprogramstoprovidea
presencefortheCommitteeandserveasapointofcontactforotherparents.
• MemberswillmaintainpatientconfidentialityaccordingHIPPAguidelinesatalltimes.
Co-ChairpersonsResponsibilities
• AParentandPediatricOncologystaffmemberwillserveasCommitteeCo-Chairs.
• Parentswillmakeaoneyearcommitmenttothisrole,withtheoptiontocontinueforanadditionalyear.
• WorkcollaborativelywiththeFACtoprovideannualCommitteegoalsandobjectives.
• Co-Chairpersonswilldefineanddistributethemeetingagenda.• Followupwithcommitteemembersinbetweenmeetingstoaddressaction
items.• Beavailableasthepointofcontactforfamilymemberswhowouldliketo
discussCommitteeparticipation.
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• DevelopanannualreportwithinputfromtheCommittee.• TheroleofrecorderwillbedelegatedbytheCo-Chairpersonsateach
meetingonarotatingbasisamongstothercommitteemembers. MassGeneralHospitalforChildren’sCancerCenter’sResponsibilities
• AttendeachFACmeeting.• CommunicateactivitiesoftheFACtotheChiefofPediatricHematology
Oncologyaswellasthetreatmentteam.• WorkcollaborativelywiththeFACtopromotethebestpossiblefamily
centeredpractice.• Ensurerespectfulcollaborationinpolicymaking,programplanningand
evaluation• ReviewandrespondtorecommendationsoftheFACinatimelymanner.• ProvidefreeparkingforFACmeetings.• Providesuitablemeetingspaceanddinnerwitheacheveningmeeting.• OffernewmemberorientationincollaborationwiththeMGHVolunteer
Servicesprogram.• RetainFACminutesforaminimumoffiveyears.• ProvideminutesandannualreportstotheHospital’sgoverningbody,as
requested. AmendmentstotheBy-laws
• Committeemembersshouldrequestitemaddedtotheagenda.• Revisionsaresentoutpriortothemeeting,withdiscussionattheFAC
meeting.• TheCommitteewillvoteontheamendmentsandapprovethrougha
majorityvote.
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MGH Heart and Vascular Centers PFACestablished 2007
“Guided by the needs of our patients and their families...”
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MGH Heart and Vascular Centers (HVC) established 2007
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MissionToensurethatthevoicesofpatientsandfamiliesarerepresentedinamultidisciplinaryefforttoenhancetheexperienceofcareattheMassachusettsGeneralHospital.The2017-2018quarterlymeetingsweredevotedtotheseimportanttopics:
• NewCardiologyPrograms/Recentinnovationsinpatientcaredelivery• JointPFACevent:TheVoiceofMGHPatientsandFamilies• TransitionsinOutpatientCardiology• ReviewingplansfornewElectrophysiologyLab• MassachusettsNurse-PatientAssignmentLimitsInitiative
September5,2017SueMcDermottNP,LeadNPandRoryWeinerMDInpatientMedicalDirectorpresentedarestructuringoftheCardiologyDivisionatMGHwiththegoalstoimprovepatientcare,furtherresearchandeducationandcommunityoutreach.TheyintroducedtheconceptoftheCardiologyServiceModelonEllison10and11wheretherewouldbe2dedicatedCardiologistscoveringtheentireunitandwouldbepresentandavailableallday.Theywouldcommunicatewiththeprimarycardiologistandcollaboratewithnurses,NPsandresidents.Thiswouldprovideincreasedcontinuityoverweekends,reducedlengthofstayandsub-specialtycarewithpromptconsolations.
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Theyacknowledgedchallengessuchasmaintainingcontinuitywithprimarycardiologists.Ourmembersvoicedconcernaboutnotseeingtheirprimarycardiologybutwerereassuredthatprimarycardiologistsareexpectedtoseepatientsinthehospitalandbepresent/communicatemajordecisions.Atthetimeofthismeeting,patientsfeelthattheyareatthecenterofthecareplanandwellcommunicatedtoandinformed.Theyunderstandthatthisfreesupcardiologistsnotonservicetoprovideaccesstopatients(newandexisting)intheoutpatient(ambulatoryenvironment)SueMcDermottgaveanoverviewoftheroleofCardiologyNursePractitionerswithintheNewServiceModel
• AllCardiologyServiceshaveateamofNursePractitionerssupportingthem.(GeneralCardiology,HeartFailure,InterventionalCardiologyandElectrophysiology)
• NursePractitionerswillassistinmanagingyourcarewhileinthehospital.• Theywillhelpexpeditetreatments,medchangesandtestingandprovide
continuity.EmergencyRoomResponse:SueinformedthemembersthatthereisnowaNursePractitionerrapidresponsesystemforpatientsintheemergencyroomwhohavebeenrecentlydischarged(within30days)followingheartattack,stentprocedure,heartfailureadmissionorAfibadmission.
• AutomaticnotificationonceapatientregistersintheED.• RapidevaluationandassessmentbyNPandMDregardingadmissionor
discharge.• IfapatientisdischargedfromtheEDtheNPwillexpediteanoutpatient
followupappointment.
MembersalsosupportedtheadditionofRNstoeachserviceacrosstheHeartCenterwhocanrespondtocallsfrompatients,families,andhomecareprovidersinatimely
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fashion,assistinprescriptionrefillprocessandclarifymedicationsandpatienteducation.September5,2018AmiB.Bhatt,MD,FACC,Director,OutpatientCardiologyandSusanMcDermott,NP,LeadCardiologyNPpresentedonthechangesandtransitionsinoutpatientcardiology.OutpatientcardiologyisnowlocatedonYawkey5.Theyareworkingtoimprovewaittimeforappointments,offermoreconvenientfollow-upoptionsandtheoverallpatientexperience.PFACcommitteewasaskedtoprovidetheiropinionon“Skypevisits”,allowingpatientstotelecommunicateforfollowupappointmentswhichwouldeliminatetheneedtovisittheofficefortestresultsorroutinefollowup.ThecommitteewasinfavorofSkypevisits.Theyalsoprovidedgreatfeedbackonhowtobestmakepatientsawareoftheavailabilityofskypeappointments.Examples:Simplyaskingpatientsiftheyhaveaccesstoskype/haveinterestinavirtualappointment;postsignsontheunits;provideanoptioninPatientGatewaytoselectavirtualappointment.ManycommitteemembersexpressedtheconvenienceandtimelinessofPatientGateway.Theindependencehasprovidedpatientswithanalternativetohospitalvisitsordirectdoctorcommunication.Theyappreciatebeingabletobookappointmentsonlineorsubmittingquestionsandreceivingaphonecall,emailortextbackwithananswerfromaphysicianorNP.SueMcDermottNPspokeabouttheinitiativetohavefollowupvisitswithin2weeksofdischargetoreviewmedicationsandsymptoms.Theappointmentwillbearrangedpriortodischargeandthevisitwouldbewiththeprimarycardiologistorhis/herNP.MembersfeltthiswasapositivechangeandfeltfineaboutseeinganNP.TheysaidthattheproviderbeinganNPorMDwasnotasimportantasknowingandtrustingtheproviderandfeelingknownbythemaswell.
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UrgentVisitswerediscussedaswell.Thesewouldbeavailableforpatientswhocalltheofficewithissuesofsymptomsrequiringevaluation.TherewillbeappointmentavailabilityforthesepatientstobeseenbyaCardiologyNursePractitionerwithin24hoursofthephonecall.Andinthemeantime,theNPwouldbeabletoadjustmedicationsand/orordertestsandarrangeforongoingevaluationifneeded.November14,2017TheVoiceofMGHPatientandFamilyAdvisoryCouncilMembersThiseventwasattendedbyallmembersofMGHPFACswiththefocusonthesharingofpatients’storiesfromdifferentPFAC’s.MichaelBiderIIIfromourHeartandVascularCenterPFACtoldthecompellingandsometimeshumorousaccountofrecognizingthesymptoms(ornot)ofaheartattackandhisjourneytoMGHfromandoutsidehospitalviaamedicalhelicopter.Fromthere,totheCardiacCatheterizationLabforaproceduretoopenhisarterytohisrecoveryatMGHandhome.HespokeaboutbeingaPFACmemberandhavingtheopportunitytoshareexperiencesandensurethatweincludethevoiceofpatientsinthecareweprovide.December4,2017ThismeetingwasourannualHolidaycelebration.MarieElenareviewedtheHospitalWidePFACeventwithmembersandwethankedMichaelBiderIIforhisexcellentpresentation.Afterover13years,TheresaGallivanRN,AssociateChiefNurseannouncedthatshewassteppingdownfromherleadershiproleintheHVCPFAC.SueAlgeri,RNAssociateChiefNursewasintroducedasanewleadershipmember.
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March6,2018PatrickEllinorMD,DirectorofCardiacArrhythmiaService,ConorBarrettMD,ClinicalDirector,SharonMcKennaRN,NursingDirector,CardiacInvasiveLabsandWilliamCullen,MPA,AdministrativeManagerpresentedontheplansforthenewElectrophysiologylab,expectedstartdateofOctober2018.Thereasonsforthenewlab:
• Patientcapacityhasoutgrownthecurrentlab
• Equipmentisoutdated
• Lackofpatientprivacy
• Oldequipmentmakesintegrationofnewtechnologieschallenging
• Limitedcapacityforurgentprocedurescausingincreasedwaittimes
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Committeemembersenjoyedseeingthenewblueprintsandplansandagreedwiththeneedforanewlab,largerspaceandnewequipment.AnewlabwillallowMGHtoprovidetopserviceandcontinuegrowingwithever-changingproceduresandequipment.AdditionalrecommendationsfromthePFACCommittee:
• Theabilitytoleavethewaitingareaandbenotifiedofchanges(Cellphone,textmessage,pager)
• AdditionalseatingaddedtotheareaaroundBlossomCafé.
• AclearseparationbetweenthewaitingareaandtheAdmittingDepartment.
• TV/computerusewhileinthewaitingroom.
June5,2018TaraTehanRN,NursingDirector,NeuroscienceICU,JulieCroninRN,NursePracticeSpecialist,OncologyandJenGilRN,StaffNurse,NeuroscienceICUpresentedinformationregardingtheMassachusettsNurse-PatientAssignmentLimitsInitiative(Novemberballotquestion).TheMassachusettsNursesAssociationisadvancingaballotinitiativetomandateminimumnursestaffinglevelsinallunits,atalltimes,inallhospitals,withnoflexibilityregardlessoflocalcircumstances.Theinitiativewouldincreasehospitalcosts,imposemandated,“at-all-timesratios”betweenregisterednursesandpatients,requirehospitalstocomplywiththeratioswithoutreducingstaffinglevelsofothernon-RNs(otherhealthcareworkers,service,maintenance,administrative,etc.),requireimplementationofapatientacuitysystem,andimposea$25,000per-violation,per-dayfineonprovidersthatdonotcomply.Ratiosarecostly,withnoguaranteeofimprovedquality,andruncountertoreformwherepaymentistiedtoqualityandpatientsatisfaction.Committeemembersaskedmanyquestionsandhadgreatfeedback.Questionsthatwereraised-andsparkedconversationwere:
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MGH Heart and Vascular Centers PFAC Members PatientandFamilyMichaelC.Bider,IIICharlieConnTeriFryerTomFryerSusanGearyPhilGearyPatHollenbeckDeniseMallenTomQuirkMattSmithSaraStropeSr.JonJulieSullivanDavidWoosterStaffSueAlgeriMarieElenaGioiellaJudySilvaCindySprogis
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MGH Heart Center and Vascular Center PFAC Bylaws MissionStatementToensurethatthevoicesofpatientsandfamiliesarerepresentedinamultidisciplinaryefforttoenhancetheexperienceofcareattheMassGeneral.Goals
Advise:
• WorkinanadvisoryroletoenhancecardiovascularcareattheMGHHVC
Support:
• ActasasoundingboardforimplementationofnewMGHHVCprograms,andimprovementofexistingprograms
Participate:
• Provideinputtoimprovethephysicalenvironmentofcare• ProviderepresentationoncommitteeswithintheMGHHVCtorepresentthe
voiceofthepatientandfamilies
Identify:
• Opportunitiestopromotewellnessandpreventionofheart,vascularandstrokeconditions
• Patient-andfamily-centeredcarestrategies• Newservices,programsand/orcommunication,forconsideration,thatmay
benefitpatientswithheart,vascularandstrokeconditionsand/ortheMGHHVC,itself
• Newprograms,effortsand/ormechanismsforconsiderationthatwouldenabletheMGHHVCpatientstobeabletogivebacktotheMassGeneralcommunitythrougheithersupport,communityorrecognitions
Represent:
• PatientandfamilyperspectivesabouttheoverallexperienceofcareattheMassGeneral
• TheMGHHVCinitscommitmenttolisteningtothevoicesofpatientsandfamilies
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Educate:
• CollaboratewithMassGeneralstafftocreate,review,andreviseMGHHVCeducationalmaterialsandprocesses
• InfluenceandparticipateintheeducationofMassGeneralstaff,includingregisterednurses,nursepractitioners,physiciansandsupportstaff
MembershipNominationandApplicationProcessRecruitmentofpatientandfamilycouncilmembersisinitiatedbyreferralfromalldisciplinesincludingMassGeneralphysicians,nurses,otherhealthcareprofessionalsandstaff.Invitationlettersandapplicationformsarethensenttopotentialparticipants.Applicantsareselectedbasedonthefollowingcriteria:
• CurrentexperienceasapatientorfamilymemberatMassGeneral• Abilitytorepresentoverallpatientcareexperience• Willingnesstoworkinanadvisoryrole• Abilitytoparticipateinaconsistentandagreeduponscheduleofmeetingsand
potentialsubcommitteeefforts• Commitmenttoserveforaone‐yeartermwithpotentialtoreneworstep
downattheendoftheterm• Onceselected,theapplicantreceivesanacknowledgementletterfromstaffof
theMGHHVC• PFACandathankyouletterissenttothereferringMassGeneralclinicianor
staffmember
TermofAppointment• MembersoftheMGHHVCPFACselectandgranttwo-yeartermtocouncil
members• Attheendofatwo-yearterm,councilmembersmayrequesttobe
reappointed• ResignationwillbesubmittedinwritingorviaemailtotheMGHHVCPFAC• Vacanciesmaybefilledduringtheyearasneeded
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RolesandResponsibilitiesMembershipconsistsof16to20members:patients,familymembersandMassGeneralstaff.Thethreemembershiprolesaredescribedbelow.
a. MGHHVC:MGHHVCCo-Directors,Programleadershipandstaff• ReferralofpotentialPFACmembercandidates• ProvidenewPFACmemberswithanoverviewoftheMGHHVC’s
mission,programsandstrategicinitiatives• PartnerwiththeMGHHVCPFACtoimprovethepatientandfamily
experienceofcareattheMassGeneral• ProvidefinancialsupportformonthlymeetingsandapprovedCouncil
Memberactivitiesbeyondthemonthlymeetingsb. MGHHVCPFACMembers
MassGeneralStaff:MassGeneralstaffwillbeappointedbytheMGHHeartCenterCo-DirectorsandAssociateChiefNurse.PatientandFamily:Includespatientsandfamiliesrepresentingdiversityinage,gender,ethnicityandnatureofheart,vascularandstrokeconditions.
c. MGHHVCPFACMembers:AllMembers
• MaintainpatientconfidentialityaccordingtoHealthInsurancePortabilityandAccountabilityAct(HIPAA)guidelines
• Advocateforallpatientsandfamiliesbyidentifyingandrepresentingtheirneedsandconcerns
• EstablishgoalsandobjectivesoftheMGHHVCPFACatthebeginningofeachyear
• Plan,facilitateandguidetheworkoftheMGHHVCPFAC• Prepareforandattendmeetings• Providenotificationbyemailorphoneinadvance,ifattendance
isnotpossibleatagivenmeeting• Participateinmeetingdiscussionsandactivities.Anypertinent
information,ideas,andsuggestionsshouldbecommunicatedatmeetingsorbyemailorphone
• Bewillingtoconsideradditionalopportunitiesforinvolvementbeyondthemonthlymeetings
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d. MassGeneralStaff
• CommunicateHVCPFACactivitiestotheleadershipoftheexecutivecommitteesoftheMGHHVC
• CommunicatewithMGHHVCstaffre:Councilrecruitment• Reviewnewcouncilmember• Reviewnewcouncilmemberapplication(s)andparticipateinselection
ofnewcouncilmember(s)• ProvidenewmemberswithanMGHHVCPFACnametagandabinder
whichincludes:MeetingSchedule,StaffandMemberContactList,StatusReport,PHSConfidentialityAgreement,CaringHeadlinesPermissionForm,WebsitepageofMGHHVC&BlumPatientandFamilyLearningCenter,MassGeneralGroundFloorMap&DirectionstotheYawkeyCenterforOutpatientCare
• Sendareminderemailtocouncilmembersone-weekpriortothemonthlymeetingincludingagendaandattachedminutesfromthepreviousmeeting
• Providecopyofagenda,minutesandanyhandoutsasrequiredateachmeeting
• ProvidecouncilmembersacopyoftheirsignedPartnersHealthcareSystem
• ConfidentialityAgreementandCaringHeadlinesPermissionForm• Providemeetingspace• Providecomplimentaryparkingandlightdinnerateachmeeting
• ProvideaPowerPointslidepresentationontheongoingCouncil’sactivitiesandaccomplishmentsasdeterminedbytheMGH
e. HVCExecutiveCommittee
• ProvideanannualprogressreportonCouncil’saccomplishmentsduringtheprecedingyeartoPCSforsubmissiontoDepartmentofPublicHealth
• RetainCouncilminutesforaminimumof5years• Transmitminutesandannualaccomplishmentstothehospital’sBoardof
Trustees
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f. PatientandFamily• CompleteMassGeneralvolunteerprogramapplicationandon-site
orientationAttendance
MembersattendquarterlymeetingswithdinnerLocation:MGHTrusteesBoardroomTime:5:30PMto7:00PM
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APF Care Allianceestablished 2010
“Guided by the needs of our patients and their families...”
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APFCAREALLIANCE established 2010
1
BACKGROUNDTheAmbulatoryPracticeoftheFuture(APF)deliversprimarycareservicestoMassGeneralemployeesandtheiradultdependents.TheAPFhasproventobeaninnovatorandleaderamongpractices,differentiatingitselfbydeliveringpatient-centeredcareinateam-basedsetting.TheCareAlliance(CA)istheAPF’sPatientandFamilyAdvisoryCouncil.Itisapartnershipofpatients,familymembers,andproviders,whichpromotesthevoiceofthepatient,innovation,andtheoptimizationofthecareexperienceforall.ItwasfoundedseveralmonthsbeforetheAPFpracticeopenedinAugust2010,toguideitfromthestart.TheAPFstaffmembersvaluepartnershipandtransparencywithpatientsandeachother.TheAPFfeelssostronglyabouttransparencythatithasservice-markedTransCAREncySMforusebytheMGHcommunity.ThistermmeanspromotingtransparencyinallthewaysthattheAPFcaresforitspatients.Patientsareaskingformorefromtheirrelationshipswiththeircareteamsandforbetteraccesstotheinformationcreatedabouttheircare(thisrangesfromprovidingthemwiththeirvisitnotesandothermedicalinformation,toeasier-to-understandbillingstatements,togreatercollaborationbetweenambulatoryandinpatientcareteamsandcareplans).Thepracticepartnerswithpatientsbyofferingelectroniccommunication,unrestrictedaccesstotestresultsandvisitnotes,andcontinuouscare,aswellashealthcoachingtohelppatientsbettermanageandachievetheirhealth,life-balance,andwellnessgoals.TheCAproactivelypartnerswithstafftoensurethat
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thecareexperienceisrewardingforpatients,patients’families,andstaff,aswellastopromotevaluesthatdefinetheAPFandsupportthosevalueswhilethepracticeexpands.Duringthedevelopmentalphasesofthepractice,theAPFreliedonsubstantialpatient-andfamily-memberinputforplanningthepracticeandforcreatingthestructurenecessaryforAPFandtheCAtosupporteachother.Asthepracticegrewinitially,itcalledontheCAtohelpmonitorimplementationofthepatient-centeredmodelwhilegeneratingandsupportingopportunitiestopromoteinnovation.Asdemandsandpressuresonstaffincreased,patientsontheCAworkedmorepro-actively,surveyingpatientsabouttheircareexperienceandcirclingbacktothemwithsurveyresultsandtheAPF’sreactiontotheirsuggestions.
Theneedtocommunicateinformationtopatientsremainsimportantasawaytohelpthembecomemoreengagedintheirownhealthcare.TheCAassessesmeansofcommunicatingwithpatientsandhasmadeprogresstowardutilizingnewvenues,includingsocialmedia,todeliverinformationtoAPFpatientsandtheMassGeneralcommunity.Webelievethatkeepingpatientsbetterinformedaboutrelevantclinicalinformation,aswellaspractice-andhospital-basednews,isvital,especiallyinanticipationofcontinuedorganizationalchange.DoingsowillfurtherAPF’sgoalstooffercarethatisbasedontransparencyandpartnerships.Communicationisatwo-waystreet.Hospital-widesurveys,likeCG-CAHPS,areonewaythatpatientsprovidefeedbackabouttheircareexperience.Deliveredatthepracticelevel,thesescoresreflectpatientsatisfactionaboutvariousfunctionsandservices,forexample:waittimes,physicianknowledgeofpatienthistory,willingnesstorefertoothers,receivingcoordinatedcare,havingaccesstocareteam,havingenoughtimeduringanappointtocoveralltheirissues,feelingrespectedbycliniciansandteammembers,easeofunderstandingphysicians’explanationsofconditionsandtreatments,etc.Thepracticetakestheresultsofthesesurveysveryseriouslyandworkshardtoimprovecare.
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Sincethepracticeopened,theCAhasbeenanintegralpartoftheAPF.TheCAisexcitedbythecontinuedopportunitiestoworkwithanopen,supportive,andcaringstafftopromotetheinnovativepatient-centeredmodelofcarewithAPFpatientsandthelargerMassGeneralcommunity.Wealsobelieveoureffortsplayanimportantroleinhelpingtomanagethechangesandchallengesthatarepartofcurrenthealthcare.
ReflectionsonEightYearsoftheCareAlliancePre-APF:PatientsweremembersoftheAPFDevelopmentTeamandservedasstrongadvocatesinthedesignofAPFanditsmodelofcareyearsbeforeAPFopeneditsdoors.Years0-2:TheCareAlliancewasfoundedinApril2010,severalmonthsbeforetheAPFopened.ThenameCareAlliance(asopposedtoPatientandFamilyAdvisoryCouncil)wasselectedtoreflectapartnershipofproviderswithpatientsandfamilies.TheCareAlliance(CA)membershipwasestablishedtoberoughlyequivalentinnumbersofprovidersandpatients/familymembersandtobechairedbypatients.Patientmemberswrotetheby-lawsfortheCA.Itwasunderstoodfromtheoutsetthattherewouldbearamp-upperiodforthepracticetoaddpatientsandconvertconceptsintooperations.TheCAprovidedvaluablefeedbacktothisprocess,withampleopportunityforpatientandfamilymemberstoaddvaluetothetransformation.ThechairsoftheCareAllianceattendedstaffmeetingsandmanagedCAmeetingsandtheiragendas.Attendanceatstaffmeetingsallowedthechairstoofferimmediateinputasoperationalconceptssuchaspatientandstaffschedulingwerediscussed.Years2-3:Asthepracticegrew,developmentturnedintofine-tuning.Thebudgetaryandoperationalsupportforapracticeexploringanewwayofdeliveringcareevolvedtobecomethesameasthatforallprimarycarepractices.Withbudgetcutsandhiringrestrictions,thepressureonprovidersandstaffincreased.TheCAmonitoredavailablepracticeoutcomeswithstaff.StaffalsoaskedtheCAtoexplorewaystoassessandunderstandpatientengagementandthepatientexperienceatAPF.
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Years3-4:Inresponsetocontinuedbudgetcuts,patientandfamilymembersoftheCareAlliancetookresponsibilityforprojectslikedevelopingandexecutingAPFpatientfeedbacksurveys,andpromotingtheuseoftheuniquelytransparentpatientportal,iHealthSpace.AformerchairworkedwithpracticeleadershiptoexploreopportunitiesforinnovatorsandtheAPFtojointlytestinnovativetechnologiesandprocedures.Aspatientpanelscontinuedtogrow,soalsodidpressureonastafftryingtomaintainthevaluesthatdifferentiateAPFfromotherprimarycarepractices.Asaresult,staffhashadfarfewerresourcestoinvestinCAprojects.Year5:TheCAremainedmindfuloftheever-changingnatureofhealthcareandtheveryreallimitsoneveryone’stime.TheCAstreamlineditsmeetingstructureandsimplifieditsroletofocusonbrief,importantcommunicationstotheAPFpatientpopulation.Theimportanceofusingmultiplecommunicationvehiclesbecameevident,andsocialmediawasaddedasawaytoprovideaneasilyaccessiblecommunicationlinkbetweenstaffandpatients,tokeeppatientsbetterinformedaboutrelevantclinicalnews,information,andchangesatAPF,aswellasbroaderMassGeneralchangesimpactingAPF(e.g.,EPICandMyChart).Year6:TheCAreinventeditsroleinadvocatingfortheexcellenceofthepracticethroughoutMassGeneralandhealthcareatlarge;builtrelationshipsandcommunitybetweenstaff,patientsandPFAC;andcreatedinnovativecommunicationpracticestobetterenhanceAPF’spatients’experienceandbecomeaneffectiveVoiceofthePatient.Year7:TheCAcontinuedtoevaluateitsgoalsandroleincommunicatingwithpatients,andisstrivingtoimplementacomprehensivemenuofcommunicationtools.WehavealsoinvitednewCAmemberswhosestrengthsindata,patientinformation,media,andmorehelpustofindsolutionstobeingarelevantvoicetoourpatients.
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Year8:TheCAprogresseditsmissionasthebridgebetweenthevoiceofthepatientandtheprovidersattheAPF.WehaveincludedservicestheAPFcanprovidefortheirpatientsinthequarterlynewsletterwhilelookingtoexpandtheCA’smembershiptoprepareforanewchapterinworkingwiththeAPF.
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1
Astheyearcomestoaclose,thepracticecontinuestokeeptheirdoorsopentonewemployeepatientsandtheiradultdependents.Inahospitalsystemwheremany,ifnotmost,primarycarepracticesareclosedtonewpatients,it’sexcitingthattheAPFhashirednewcliniciansandexpandedaccessrangingfromPCPtohealthcoaches.Thisnewcapacity,whichbringsnewstaff,patients,andenergysignalsgrowthandopportunityforthepractice,butisalsoachangefromthetight-knit,intimatenatureoftheoriginalteam.Thehealthcareenvironmentcontinuestobechallengingforprimarycare.TheuniquenessoftheAPFdoesnotprevent/protectitfromtheimpactoftimeandincomepressures—pressuresthatmaybecompoundedgiventhatthemajorityofourpatientsaredealingwiththemduringtheirworkhours,asemployees.AndwhiletheAPFisapracticecommitted,frominception,toteam-basedcareandanextraordinaryexperienceforpatients,thesecommitmentsneedconstantattentionandenergy.Assuch,thepracticeandCAtrytobeprotectiveofourcommitmentandtempertheimpactofpressureslikereducedbudgets,increasingpatientpanels,laboriousmedicalrecord-keeping,andlimitedtimeresources.TheCA’svisionduring2017and2018wastoexpandreachouttothepatientsvianewchannels.WiththeadditionofVidScripsandthecontinuednewsletter,wehavebeenlookingtomakethepatientexperiencemorepersonalandopen.Aswecontinuethisexpansionintounchartedpatientoutreach,wecontinuetolookfornewandexcitingmethodsofdeliverytohelpreachasmanypatientsaspossible.
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2
Inadditiontoitsbroadpurposeofengagingpatients,supportingstaff,andcontributingtopracticeoutcomes,theCAsidentifiedthefollowingspecific2019priorities,developedinresponsetostaff,leadership,andCareAlliancememberinput:
• ContinuethenewsLetterwithpotentialexpansionintosocialmediawiththehelpofhealthcoaches
• Constructaprospectivepieceofthecarealliancesinit’s8yearssinceinceptionandit’sroleintheAPF
• ExpandtheCareAllianceteamtoadd2newmembers
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2019GOALS
1. Buildastrong,effectiveteamtorepresentthevoiceofthepatientandmakeanimpactonpatientsandpractice.
• Wehavegonethroughpreliminaryinterviewsforpotentialcandidateswhoseskillswilldifferfromthecurrentcareallianceteamallowingustoexpandourideasandcreativity
• WecontinuedtoencouragestafftorecommendpatientswhoarefamilymembersorworkershereattheHospitaltoallowforbetterschedulemanagementofourmeetingsandhavethemaximumnumberofCareAlliancememberpresentateachmeeting
2. Introduceapatientnewsletter
• TheLINKcontinuesonaquarterlybasis,beingdistributedthroughgatewayevery3-4months
• LogisticalbarrierscontinuedtolimitfulldistributiontotheAPF’spatientshoweverfeedbackfromstaffandcolleagueshasbeenpositive
• WehopetoexpandcontentbyaddinginprofilesofCareAlliancestaffmembers
3. Assistincreation/administrationofsupplementalsurveystogatherinformationonpatients’careexperiences
4. CreateVidscrips(short,single-topicvideosabouthealthconditionsandtreatments)
• WehavecreatedmultiplevideosfortheAPFaboutwhichwearenowawaitingmetrics.
• Videoshavebeenposted,butthereisnotaccuratewaytodeterminelengthofviewuntilrecently,howeverwearestillawaitingtheseresults.Duetothis,wehaveheldoncreatingmorecontentuntilwecanbetterunderstandhowthistoolcanassisttheAPF
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APFCAREALLIANCEMEMBERS
TheCAleadershipremainspatient-driven.In2018,CAleadershipshiftedwiththepromotionofJarrettMaggiotojoinJulieMartinasaco-chair,asPaulO’Learysteppeddownfromhisposition.RobertEvanshasbeenrelinquishedofhispositionontheCareAlliance.Bi-monthlymeetingswithCAmeetingcontinuedwhichallowedformoregrowthbetweenmeetings.Patientmembersfacilitatemeetingsonarotatingbasisandcommunicatebetweenmeetingstobrainstormandworkonactionplans.TheCAcontinuestouseRapidActionTeams,whennecessary,todeliverurgent,pragmatic,problem/opportunityfocusthatproduceaction-orientedresults.CAmembershaveanopeninvitationtoattendweeklyAPFstaffmeetingstounderstandcurrentstaffconcernsandprovideadditionalpatientperspectives.APFLeadershipisactive,supportiveandeasilyaccessibletoCAmembers.
PatientsJarrettMaggio(Co-Chair)JulieMartin(Co-Chair)NancyDavisAnnErwinPaulO’Leary
StaffAdrianaMesaBalbinLakeyaBryantMJByrnesTinaByrnesCindyCasillaBenCrockerTerriEganKatieEngelsEmilyFinnAnnieHelgasonDanHendersonAaronHoffmanJessicaHuCassendraLaineJaneMaffie-LeeStephenLynchMaryAnneMarshallLoriNewmanGlendaShuelMillyTeixeiraDonnaWinderl-Malyak
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AMBULATORYPRACTICEOFTHEFUTURE:CAREALLIANCEBY-LAWSArticleI.Name
Thenameofthepatient/provideradvisorycounciloftheAmbulatoryPracticeoftheFuture(APF)istheAPFCareAlliance,sometimesalsoreferredtoastheCareAlliance.TheAPFCareAllianceisaself-governingentityoftheAmbulatoryPracticeoftheFutureandMassachusettsGeneralHospitalcurrentlyoperatingat101MerrimacStreet,Suite1000,Boston,Massachusetts,02114.
ArticleII.MissionThemissionoftheAPFCareAlliance,apartnershipofpatients,familymembersandproviders,istopromoteinnovationandtheoptimizationofthecareexperienceforall.
ArticleIII.GoalsTheAPFCareAllianceisdedicatedtoassuringthedeliveryofthehigheststandardsofcomprehensiveandcompassionatehealthcarebytheAmbulatoryPracticeoftheFuture,aprimarycarepracticeofMassachusettsGeneralHospital.Thisisaccomplishedbyworkinginactivepartnershipwithhealthcareprovidersto:
• strengthencommunicationandcollaborationamongpatients,familymembersandproviders
• promotepatientandfamilyadvocacyandinvolvement• proposeandparticipateinprograms,services,andpolicies.
ArticleIV.Members
Section1.RolesandResponsibilities.Advise:WorkinaproactiveadvisorypartnershiproletoenhancethepatientandstaffexperienceofprimarycareattheAPF.
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Support:ActasasoundingboardforimplementationofnewandinnovativeAPFinitiativesandimprovementofexistingprograms.
Participate:AttendandparticipateinCareAlliancemeetingswithgoodlisteningskillsandrespectforthepositionsandopinionsofothers.
Identify:SeekopportunitiestobeinnovativeandbeproactiveindrivingimprovementoftheserviceandpracticeofhealthcaredeliveryattheAPF.
Represent:Bringpatient,familyandstaffperspectivesontheAPFexperiencetoenhancethehealthcareexperienceofallstakeholders.
Educate:SharelessonslearnedintheAPFpracticewithotherprimarycarepracticeswithinPartnersHealthcareServicesandwiththebroadermedicalcommunity.
Evaluate:ReviewtheannualaccomplishmentsoftheCareAllianceagainstgoalssetatthebeginningoftheyear.
Section2.MembershipEligibilityPatients,familymembersandstafffromAPFareeligibletobemembersoftheCareAlliance.MembersshouldbecommittedtoworkinginpartnershipwithallAPFstafftorepresenttheneedsofpatientsandfamiliesandtoprovideinputinthedevelopmentofprogramsandpoliciesthataddresshealthcarechallengeswithintheAPFpractice.Section3.MembershipCategoriesTheCareAlliancewillconsistofActive,EmeritusandStaffMembersasfollows:ActiveMembers:TheCareAlliancewillbemadeupofabroadbaseofupto12APFpatientorfamilyActiveMembers(atleasttwo-thirdspatients)andserveonavolunteerbasis.EachoftheAPF’sthreecareteams,whenoperational,willberepresentedbyuptofourpatientorfamilyActiveMembers.ActiveMembersserveforatwo-yearterm,renewableeveryotheryear,foramaximumofthreeterms.Individualswillbepolledfortheirpreferenceforcontinuedmembershipwhentheirtermsareup.
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ActiveMembersareexpectedtoparticipateinallmonthlyregularmeetingsandsuchspecialmeetingsasmaybecalledfromtimetotime.OneactivepatientorfamilymemberservingontheCareAllianceshouldattendeachstaffmeeting.Itishoped,butnotexpected,thatsomepatientorfamilyActiveMemberswillconsideropportunitiesforinvolvementinspecialprojectsinitiatedbytheAPFortheAPFCareAlliance.AllActiveMembersmustbeincompliancewiththerequirementsforCareAllianceparticipationandactivevolunteerstatus.NonemployeemembersmustgothroughtheVolunteerOrientationandTraining,whichincludesaCORIbackgroundcheck,aswellasHIPPA,safetyandsecuritytraining.EmeritusMembers: CareAlliancememberswhohaveservedthreetermsasActiveMembersmaybecomeEmeritusMembers.Individualswillbepolledfortheirpreferenceforcontinuedmembershipannually.EmeritusMemberswillcontinuetoreceivematerialsdistributedtotheCareAllianceandareexpectedtoattendCareAlliancemeetings.EmeritusMembersmaycontinuetorepresenttheCareAllianceoncommitteesandprojects.EmeritusMembersmustbeincompliancewiththerequirementsforCareAllianceparticipationandactivevolunteerstatus.TheFoundingEmeritusMemberWinthropM.HodgesiseligibletoserveasChairEmeritusforsuchperiodashechoosestoserve.Uponhisresignation,aneligiblesuccessormaybenominatedbyamajorityoftheCareAlliancetoservefortwoyears.OnlyoneChairEmeritusmayserveconcurrently.ChairEmeritusMembersmaybere-nominatedintheeventnoothereligibleMemberchoosestoserveinthatcapacity.IntheeventtheservingChairEmeritusresignsbeforetheendoftheirtwo-yearterm,theCareAlliancemayatitsdiscretionbutisnotrequiredtonominateanyEligibleMembertoservetheremainderoftheincumbentMember’sterm.StaffMembers:WiththeexceptionoftheAPFDirectorandAssociateDirector,StaffMembersmayattendCareAlliancemeetingsonarotatingbasis.Section4.OtherMembershipCategoriesFromtimetotime,theCouncilmaydevelopothermembershipcategoriestofitwiththeneedsoftheAPFandthemissionoftheCareAlliance.
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ArticleV.Co-Chairs
Section1.DutiesTheCareAlliancehastwoCo-ChairswhoserolesaretoworkinpartnershipwithAPFleadershiptoguideCareAlliancegoalsandobjectives;ensuretheCareAllianceisfollowingitsmissionandbylaws;setthemeetingagenda;leadorappointapatientCareAlliancemembertofacilitatemonthlymeetings;provideleadershipforCareAlliancemembers;andserveoncertainAPFcommitteeswhereoneorbothoftheco-chairsisspecificallyrequested.Section2.NominationProcedureCandidatesfortheCo-ChairpositionwillbenominatedbyCareAlliancemembersandmusthaveatleasttwoyearsofexperienceasanActiveMember.Section3.ElectionProcedureAnewCo-Chairwillbeelectedeverytwoyears,requiringtheaffirmativevoteoftwothirdscastbyActiveandStaffvotingmembers.ThenewCo-ChairwillbeannouncedduringtheDecemberCareAlliancemeeting.Section4.TermThestandardtermforCo-Chairwillbetwoyears.ThetermsoftheCo-Chairswillbestaggered.ThetermofofficewillbegintheJanuary1staftertheCo-Chairiselected,unlessotherwisespecified.Section5.VacanciesACo-ChairmayresignfromofficeatanytimebysubmittingwrittennotificationtotheDirectoroftheAPFandtheotherCo-Chair.TheCareAlliancemaychoosetoelectareplacementtocompletethetermofthatCo-Chairortoleavethepositionvacantuntilthenextscheduledelection.Section6.TerminationACo-ChairwhoisnotfulfillingtheroleasoutlinedinArticleV,Section1,orisnotfulfillingtheroleofanActiveMemberoutlinedinArticleIV,section2,andhavingbeengivenappropriatenoticeandanopportunitytofulfilltherequirements,mayberemovedasco-chairbyavoteoftwothirdsoftheActiveandStaffvoting
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membersviaelectronicvote.TheAPFandtheCareAlliancereservetherighttoterminateanyvolunteerwhodoesnotupholdAPFprofessionalbehaviorstandards.
ArticleVI.MembershipProceduresSection1.MembershipApplicationPatientandfamilymemberswillberecruitedeverytwoyearstofillvacantpositions.PatientsorfamilymembersofthepracticearewelcometoapproachstaffmemberstoindicatetheirinterestinservingontheCareAlliance.AnyAPFpatientorfamilymembermayapplytobeanActiveMemberoftheCareAlliance.MembershipisgrantedaftercompletionofamembershipapplicationprocesssetforthinSection2below.AllnewmemberswillattendtheirfirstCareAlliancemeetingonthesamedateandwillbeorientedtotheCareAlliancetogether.EverytwoyearspatientorfamilymemberswillbeofferedtheoptiontocontinueasanActiveMemberforanothertwoyears,becomeanEmeritusMemberorresignfromtheCareAlliance.Section2.ApplicationProcessAnActiveMemberapplicantmaysubmitamembershipapplicationtotheCareAllianceforreviewatanytime.Nominationsmaybemadebystaffmembersorpatientorfamilymembersandnomineeswillbeinterviewedbyaminimumofonestaffmember,oneCo-Chair,andonepatientorfamilymember,jointlyorseparately.Uponcompletingtheapplicationreviewandinterviews,theinterviewerswillpresentthenomineesataCareAlliancemeetingandavotewilldecidewhetheranofferofmembershipshouldbeextendedtotheapplicant.AnewActiveMember’stermofmembershipwillcommenceatthenextCareAllianceorientationmeetingfollowinghisorheracceptancetotheCareAlliance.
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Section3.LeaveofAbsenceAnActiveorEmeritusMembermayrequestaleaveofabsencefromtheCareAllianceatanytimeduringtheirtermwhenunusualorunavoidablecircumstancesrequirethatthememberbeabsentfrommeetingsandfromworkingonAPFcommitteesand/orprojects.Themembermustsubmitarequest,inwriting,totheCo-Chairs,statingthereasonfortherequestandthelengthoftheleave.TheCo-Chairswilldetermineiftherequestwillbeaccepted.MembersonanapprovedleavearerequiredtocontacttheCareAllianceCo-Chairpriortotheexpirationdateofgrantedleave,ensurevolunteerstatusiscurrent,andattendthefirstmonthlymeetingaftertheleaveends,orrequestaone-monthextension.Apositionwillbeheldforamemberonleaveofabsenceforthreemonthsorless.Ifamembercannotreturnattheendofthethree-monthperiod,plustheonemonthextensionifgranted,heorshewillbeaskedtoresignandwaitforanopenseattobecomeavailablewhennextagainabletofulfilltheservicerequirements.Section4.ResignationAnActiveorEmeritusMembermayresignfromtheCareAlliancebyfilingaletterofresignationwiththeCo-ChairsandtheAPFDirector,effectiveonthedatespecifiedinthenoticeofresignation.Patientorfamilymemberswhomissthreemeetingsinarowwithoutexplanationwillbeconsideredtohaveresigned.Section5.TerminationCareAlliancememberswhoarenotfulfillingtheroleofanActiveMemberasoutlinedinArticleIV,Section2,havingbeengivenappropriatenoticeandanopportunitytofulfilltherequirements,maybeterminatedfromtheCareAlliance,byavoteoftwo-thirdsoftheActiveandStaffvotingmembersviaelectronicvote.TheAPFandtheCareAlliancereservetherighttoterminateanyvolunteerwhodoesnotupholdtheAPF’sprofessionalbehaviorstandards.
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ArticleVII.Meetings.Section1.RegularMeetingsRegularmeetingsoftheCareAlliancewillbeheldonthethirdThursdayofeachmonthattheAPFpractice,unlessotherwiseplanned,presumingthepresenceofaquorum.CareAlliancemeetingsareopentoallinterestedstaffmembers.AgendaswillbedistributedpriortoeachmeetingandminuteswillbemaintainedonfileforaminimumoffiveyearsaspartoftheAPFCareAllianceoperationsprotocol.Section2.SpecialMeetingsSpecialmeetingsmaybecalledbytheCo-Chairsastheydeemnecessary.CareAlliancememberswillbegivenatleastfivebusinessdays’noticeofthespecialmeetingscheduleandagenda.Section3.QuorumAnofficialmeetingwillrequirethepresenceofaminimumofaCo-Chair,twopatientsandaminimumoffourStaffMemberstobecalledtoorder.Section4.VotingOnlyActiveandStaffMembersmayvoteonofficialCareAlliancebusinesswhenvotingisrequired.AllissuestobevotedonshallbedecidedbyasimplemajorityvoteofthoseCareAlliancememberspresentatthemeeting.Inaddition,electionorterminationofCo-ChairsandapprovalofrevisionstobylawsrequireavoteofActiveandStaffvotingMembers.Suchvotesmaybecountedbybeingpresentatmeetings,submissionofanabsenteeballot,orsubmissionofanelectronicballot.Intheeventofatievote,allvotingmemberswillbeaskedtorecasttheirvotes.Threeconsecutivetievotesresultsinthemotionbeingtabledindefinitely.ArequestforconsensusofActive,StaffandEmeritusMembersmaybeconductedtoapproveitemssuchasannualgoals,endingameetingearly,orschedulingaretreat.Consensusontheseissuesshallbedecidedbyatwo-thirdsmajorityof
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thoseCareAlliancememberspresentatthemeeting.
ArticleVIII.ConfidentialityCareAlliancemembersmustnotdiscussanypersonalorconfidentialinformationrevealedduringacouncilmeetingorrelatedprojectcommitteemeetings.CareAlliancemembersmustadheretoallapplicableHIPPAstandardsandguidelines.ViolationsmayresultinrepeatedHIPPAtrainingorare-evaluationofmembershipstatus.
ArticleIX.AmendmentProcedureThesebylawsmaybeamendedatanyregularmeetingoftheCareAlliancebytheaffirmativevoteoftwo-thirdsofthememberspresentandvoting,providedtheamendmenthasbeensubmittedinwritingatthepreviousregularmeeting.
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Adult Cystic Fibrosis PFACestablished 2012
“Guided by the needs of our patients and their families...”
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AdultCysticFibrosisPFAC established 2012
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TheMGHAdultCysticFibrosisPFACwasestablishedwiththepurposeofservingasanadvisoryresourceinconjunctionwiththecenterstaffinordertoenhancethequality,safetyandexperienceofcareforadultswithcysticfibrosis.
Untilrecently,cysticfibrosishasbeenviewedprimarilyasapediatricdisease.Advancesinresearchandnewmedicationswhichhavebeendevelopedinthepasttwodecadeshaveincreasedlifeexpectancyandnowhalfofallpatientslivingwiththisgeneticdiseaseareovertheageof18.Becauseitisalife-longdisease,patientshaveauniqueandrichperspectivetoofferasmembersofthePFAC
TheMGHAdultCysticFibrosisCentertreatsapproximately200individuals.PatientmembersofthePFACmustbeover18yearsofage,followedattheMGHcenter(orafamilymemberofapatient)andareselectedonthebasisofcommunication/interpersonalskills,backgroundexperience,aswellasproblemsolvingandanalyticalability.
Inadditiontopatientmembers,thePFACiscomprisedofupto5clinicstaffandonerepresentativefromtheMA/RIChapteroftheCysticFibrosisFoundation.In2018itwasnecessarytochangethemeetingdayfromthesecondTuesdaytothesecondFridayofeachmonthtoaccommodateinclusionofamemberofphysicianstaff.
Accomplishments
1. OurPFACprovidedinputtoclinicstaffandPulmonaryAdministrationintothechangeinlevelofpatientsatisfactionwithcareafteraclinicstaffingdecrease2yearsago.Patientswereexperiencingunreturnedphonecalls,lackof
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continuitybetweeninpatientandhomecarandunacceptablelengthoftimeforprescriptionrefills/priorauthorizationsafterstaffcuts.Wemetwithadministrationseveraltimestoprovideinsightandoutlinethechangesinqualityofcare.
• 2. Theattendingphysicianstaffwereincludedinmeetingsonanalternating
basistobetterinvolvealllevelsofclinicstaff.•
3. Weassistedindevelopingplantoaddressissueoflastminutecancellations/no-shows,whichnegativelyimpactstheclinicbudgetandultimatelypatientcare.Clinicstaffsentoutlettersexplainingtheimportanceofamplenotificationforappointmentcancellations/changes.
• 4. ThePFACcontinuestoliaisewiththeMA/RIchapteroftheCysticFibrosis
Foundationtopromotecommunicationbetweenclinic/foundation/patientsinordertokeepuptodatewiththelatestresearchdevelopments,localfundraisingeffortsandnews.
• 5. WehaveassignedFacebookpostingstomembersonarotatingbasiswith
updatedtokeeppatientsengagedinclinicgoings-on.Informationfromstaffaswellaspatient-to-patientcommunicationenhancespatientengagement.Thishasbeenveryhelpfulintermsofimportantinformationregardingdrugrecalls,clinicclosuresduetoweatheretc.Patientsareabletocommunicateandoffersuggestionsandadvicetocommonquestions.
• 6. Wesetgoalsforthecomingyearwhichincludeworkingonsurveytoassess
patientneeds(parkingassistanceetc.),continuingtodevelopuseofPFACtoimprovepatientcare/experience,addGo-to-MeetingascommunicationoptionandimprovingcommunicationwithAdministrationofPulmonarytoprovidedialogandfeedbackonstaffingandpatientcare.
7. ProvidedbudgetforuseofdiscretionaryfundforPFACtopurchasesuppliesandawebcameraformeetings.Educationalmaterialsfornewpatients/patientstransitionedfromthePediatricCFCenterareprovidedwithpositivefeedback.
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• 8. DuetoadditionalMDstaffing/clinictimes,wehavechangedourmeeting
day/timetoallowmaximumstaffparticipation,inkeepingwithourcontinuedgoalofreceivingandprovidingfeedbackfromallclinicstaff.
• 9. We have updated information and teaching sheets for patients (e.g., What to
Expect During an Admission, PICC line placement) to better serve all aspects of CF care, both inpatient and outpatient.
• Outcomes
• 1. A part-time Medical Assistant position created to alleviate some of the work
burden of the clinic RN. •
2. Our close relationship with CFF of MA/RI promoted good communication which has kept us up to date on fundraising efforts, new policies, NACFC news and up to date research. This is especially important as new drugs are being developed and become available.
• 3. Patients have been kept up to date on clinic matters and important news (i.e.
drug recalls, Listeria outbreak) via Facebook, enabling patients to make informed decisions that impact their health.
• 4. Since our inclusion of clinic physicians, we have had better communication with
entire clinic staff, which benefits both patients and physicians. Physician staff has expressed that they enjoy the interaction with the committee and are able to provide a perspective unique to their position to the committee.
• 5. Minutes distributed to absent members and Administration in order to keep
everyone up to date, regardless of ability to attend or call in to meetings. This helps reduce time spent reviewing past meetings at the start of our meeting and makes the best use of our time together in addition to keeping the Pulmonary Administration in the loop of our clinic, since we are in an off-site building.
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ADULTCYSTICFIBROSISPFACMEMBERS
PatientsKimNunnari,Co-chairBrianArmstrongSeanMcCarthyMegKiley-MurraySheilaTines
StaffLindsayBringhurst,RNAbbyFolgerGretchenGarlowSuzeAvignonCaitlinMillerIsabelNeuringerChristopherRichardsLeonardSicilian
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AdultCysticFibrosisPFACBylaws
Article1-NameandPurpose
Section1.NameThenameofthisorganizationshallbethePatientandFamilyAdvisoryCouncil(PFAC)oftheAdultCFProgramatMassachusettsGeneralHospital.
Section2.PurposeThePatientandFamilyAdvisoryCouncil(PFAC),establishedin2012,servesasanadvisoryresourcecommitteeinpartnershipwiththeMGHAdultCFProgram.Itspurposeistoprovideadiversityofperspectivesinmattersrelatingtotheprovisionofmedicalcaretoadultpatientswithcysticfibrosisinanefforttoenhancequality,safety,experienceofcareandthevalueofclinicalresearch.
Section3.MajorGoals
A. Toimprovethequalityoflifeforpeoplewithcysticfibrosis.B. Toofferideasandsuggestionsregardingpolicyandpracticethataffect
patient-centeredcare.C. Toreviewrecommendationsandconcernsasidentifiedbypatients,
caregivers,staff,physiciansoradministrationD. Toserveasaneducationalrole,asneededorrequested,regarding
patient/caregiverperceptionofcareandservices.E. ToassistintheplanningofnewservicesasrequestedbytheMGHAdultCF
Centerclinicalstaff.F. Toserveasadvocatesforthepatientsandcaregiversinordertoassistour
centerinbecomingonethatprovidesexcellentclinicalcare.G. TouseitsbesteffortstoquantifytheimpactofthePFAContheMGHAdult
CFpatientpopulation.
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Article2-Membership
Section1.SelectionCriteriaforPatientsA. Membershipwillconsistofadultpatientsandfamilymembersofadults
withcysticfibrosiswhoarereceivingCFcareatMGHAdultCFCenterwhohavevoluntarilyagreedtobeamember.
B. MembersmustbereceivingcareattheMGHAdultCFProgram.C. Thefollowingareimportantfactorsthatareconsideredwhenconsidering
membershiptoPFACparticipation:• CommunicationSkills• InterpersonalSkills• Background,TrainingandExperience• ProblemSolving• AnalyticalAbility
D.MinimumageforparticipationintheAdultCFPFACis18years.
Section2.OthermembersA. MembershipwillconsistofuptofivestaffmembersfromtheMGHAdult
CFProgram.B. MembershipwillconsistofonerepresentativefromtheNewEngland
ChapteroftheCFFoundation
Section3.TermsofServiceA. Membersshallservea12-monthtermbeginningSeptember1stofeach
yearandmaybere-invitedtoparticipate.B. MembersjoiningthePFACafterSeptember1shallcompletetheirtermon
thefollowingSeptember1st.
Section4.DutiesofMembersRegularattendanceisvitaltothepurposeoftheBoard.EachmemberisstronglyencouragedtoparticipateinallPFACmeetingsandanyappointedTaskGroup
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conferencecalls/emails.Ifanymembercannotparticipateinaconferencecall,theyaretocommunicatewithboardmembersforanupdateandreviewmeetingminutes.
Article3-MeetingRoles
Section1.RolesLeader,RecorderandTimekeeper.TheroleoffacilitatorwillbefilledbyAdultCFClinicalSocialWorkerandAdultCFNurseCoordinator.
Section2.SelectionVolunteersforeachrolewillberequestedatthebeginningofeachmeeting.AllroleswillberotatedamongPFACmembersateachmeeting.Everyonewillbeinvitedtotakeaturnineachrole.
Section3.DutiesandResponsibilities:
A. Leader-TheleadershallpresideduringthemeetingofthePFACforwhichhe/shehasvolunteeredandshallhavetheauthoritytoenforcethebylaws.Thespecificrolesofleaderarenoted:• Openthemeeting• Reviewtheagendaforrevisionsandtime• Reviewrolesandwhoisdoingwhat(timekeeper,recorder,facilitator)• Movethroughtheagendaoneitematatime• Keeptheteamfocused• Establishanappropriatepace• Facilitatediscussions• Manageparticipation• Helptheteamuseappropriatedecision-makingmethods• Helptheteamevaluatethemeeting
B. Recorder-Therecorderisresponsiblefortheminuteswhichshallinclude
highleveldiscussions,theirresultsandnextstepsandalistofideasfor
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thenextmeetingagenda.Inaddition,thefollowingshallbeincorporatedintotheminuteswhenappropriate:• Improvementtoolssuchaslists,tables,etc.totrackmeeting• Listsoffurtherstepsforspecificagendaitems
C.Timekeeper-Thetimekeeperensuresadequatetimeallotmentsper
agendaitem.Theyshall:• Movetheteamalongbykeepingtrackoftimeduringthemeetings• Alerttheteamwhentheallottedtimeishalfover• Announcewhen1minuteisleft• Announcewhentimeisupandifneededreconsiderationofthe
allottedtimeorrevisionoftheagendaisneeded
D.Facilitator-Thefacilitators(AdultCFClinicalSocialWorkerorNurseCoordinator)shallensurethateachboardmemberhasachancetoparticipateindiscussions.Thefacilitatoralsoshall:• Remindtheleaderandteamwhenconversationsarenotconsistent
withtheagenda• Pointoutwhenmembersarenotfollowinggroundrules• Manageconflictandprovidedirectfeedbacktomemberparticipation.
E.Attimes,carryingouttheserolesmayprovideaccesstoconfidential
information.InagreeingtoparticipateonthePFAC,membersalsoagreetokeepsuchinformationwiththeconfinesofthegroup.
Section4.TermsofOfficeEachrolewillrotatefromonemeetingtothenext,withtheexceptionoftheroleoffacilitators.
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Article4-TaskGroups
Section1.TaskGroupsThewholeboardmayformspecificandvariousTaskGroups.
Section2.Powers,DutiesandResponsibilitiesPowers,dutiesandresponsibilitiesoftheTaskGroupshallbeassignedbytheBoard.
Section3.MembershipNon-BoardmembersmayserveonTaskGroupsattheconsentofthefullBoard.
Section4.AuthorityTheauthorityofanyTaskGroupistoadvisethefullBoardonissuesasassigned.
Article5-OrdersofBusinessandScheduleofMeetings
Section1.MeetingScheduleA. PFACmeetingsshallbeheldonthe2ndTuesdayofeachmonthfrom
SeptembertoJune.CFinfectioncontrolpracticeswillbefollowed.Forthisreason,onepatientwillbeinvitedtoattendeachmeetinginperson,theotherparticipantswillparticipatebyconferencecall.ThereshallbenomeetingsduringthemonthsofJulyorAugust.Update8/2018:Meetingschedulechangedtothe2ndFridayofeachmonth.
B. Participationwillbebygroupmeetings,conferencecallsorinternetcommunication.
C. Aminimumof2patientmembersand1clinicalstaffmemberisrequiredtoconductameeting.
D. Themeetingshalllastnolongerthan90minutes.
Section2.AgendaDevelopmentThePFACmemberswilldevelopmeetingagendasattheendoftheprevious
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meeting.AnymemberwishingtoincludeanitemontheagendahastheresponsibilitytodraftandpresenttheagendaitemstotheCouncilforapprovalandinclusion.
Section3.AgendaDistributionTheagendashallbepublishedbytheAdultCFClinicalstaffanddistributedtomembersviagroupemailoneweekpriortothemeeting.
Section4.MeetingRecordsThedesignatedRecordershallposttheminutesofthePFACmeetingwithinoneweekafterthemeeting.AllminutesandboardcorrespondenceshallbepostedtothePFACviagroupemail.
Article6-ParliamentaryAuthority
Section1.GuidelinesofAuthorityThePFACisadvisoryinnatureandwillnothavedirectauthorityoverpolicy,procedureorpractice.AnyauthoritywillbegivenbytheMGHAdultCFProgram.ThePFACcannotenterintoanyagreementsorbindMGHinanyfashion.AnyeventsorganizedorstatementsissuedbythePFAConbehalfofMGHaredonesowithpriorapprovalofMGHAdministrationincoordinationwiththeMGHAdultCFProgramstaff.
Section2.EstablishingaMajorityForadministrativedecisions,suchasrecommendationstoremoveamemberorchangingthebylaws,amajorityisestablishedbyamajorityofallmembersoftheBoard.Forothermatters,amajorityisestablishedbyasimplemajorityofallmemberspresent.
Section3.AdvisingtheDirectorTheBoardshallvoteonanyissuerequiringadvicetotheDirector.Consensusisnotrequired.TheMGHAdultCFProgramstaffshallassisttheboardincommunicatingtheBoard’sadviceandpresentingittotheProgramDirector.
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Section4.MinorityReportsOnanyissueresultinginadvicetotheMGHAdultCFProgramDirector,ifthereisnotconsensusamongallmembersoftheBoard,minoritymembersareencouragedtosubmitminorityreportsfortheDirector’sconsideration.
Article7.AmendmentProcedures
Section1.BylawChangesAnyarticleofthesebylawsmaybeadded,deletedoramendedbyamajorityvoteofatleast2/3ofthemembershipoftheBoardandfinalizedwhenallAdvisoryCouncilmembershavebeennotifiedofproposedchangesinwriting.
Section2.EffectiveDateThebylawsoftheAdultAdvisoryBoardshallbecomeeffectiveasadoptedbyatwo-thirdsmajorityvoteoftheBoardonJune12,2012.
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