2017-18 Patient and Family Advisory Council Annual Report · for enhanced engagement throughout the organization. In the spring of 2018, the G-PFAC was recognized by Mass General

2017-18Patient and Family Advisory Council

Annual Report

“Guided by the needs of our patients and their families...”

MASS GENERAL MISSION

“Guidedbytheneedsofourpatients

andtheirfamilies,Massachusetts

GeneralHospitalaimstodeliverthe

verybesthealthcareinasafe,

compassionateenvironment;to

advancethatcarethroughinnovative

researchandeducation;andto

improvethehealthandwell-beingof

thediversecommunitiesweserve.”

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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General PFACestablished 2011

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.”

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.

MassGeneral Hospital for Children FACestablished 1999


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.

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

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;

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.

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;

9. Quorum:9.1. Forvoting,aquorumrepresentsatleast7members,oneofwhommustbea

staffmember,andtwomoreparentmembersthanstaffmembersareneededforanyvotetobeofficial.Ifthereisnotaquorumatameeting,thevotewillbetakenviaemailandthevotesofeightfamilymembersarerequiredforthevotetobeofficial.

10. Amendments:10.1TheprocesstoamendtheFACBy-Lawsisasfollows:

- Councilmembersubmitssuggestedrevisioninwriting.- RevisionsaresentouttomembersanddiscussedataCouncilmeeting.

10.2TheCouncilwillvoteontheamendmentsandapprovethroughmajorityvote.


MGH Cancer Center PFACestablished 2001

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.


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.

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.

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.

MGH Heart and Vascular Centers PFACestablished 2007


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:

MGH Heart and Vascular Centers PFAC Members PatientandFamilyMichaelC.Bider,IIICharlieConnTeriFryerTomFryerSusanGearyPhilGearyPatHollenbeckDeniseMallenTomQuirkMattSmithSaraStropeSr.JonJulieSullivanDavidWoosterStaffSueAlgeriMarieElenaGioiellaJudySilvaCindySprogis

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

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

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

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

f. PatientandFamily• CompleteMassGeneralvolunteerprogramapplicationandon-site

orientationAttendance

MembersattendquarterlymeetingswithdinnerLocation:MGHTrusteesBoardroomTime:5:30PMto7:00PM

APF Care Allianceestablished 2010


APFCAREALLIANCE established 2010

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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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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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Inadditiontoitsbroadpurposeofengagingpatients,supportingstaff,andcontributingtopracticeoutcomes,theCAsidentifiedthefollowingspecific2019priorities,developedinresponsetostaff,leadership,andCareAlliancememberinput:

• ContinuethenewsLetterwithpotentialexpansionintosocialmediawiththehelpofhealthcoaches

• Constructaprospectivepieceofthecarealliancesinit’s8yearssinceinceptionandit’sroleintheAPF

• ExpandtheCareAllianceteamtoadd2newmembers

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

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.

Adult Cystic Fibrosis PFACestablished 2012


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.

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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Documents

2017-18 Patient and Family Advisory Council Annual Report · for enhanced engagement throughout the organization. In the spring of 2018, the G-PFAC was recognized by Mass General