patient advisory board the voice of patients...
TRANSCRIPT
30/11/2017 SessionOne
PATIENTADVISORYBOARDTheVoiceofPatientswithinEURO-NMD
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases
MainobjectiveofEURO-NMD:Ø BuildabridgebetweenEURO-NMDandtherare
neuromuscularpatientcommunity:• Ensurethatpatientneedsareincludedinthestrategicand
operationaldeliveryoftheERN• Helpimproveaccesstohighqualitydiagnosis,careand
treatmentMainobjectiveofthePABwithinEURO-NMD:Ø Ensuretrueandequitablerepresentationofallthepatient
voiceintheERN
2
Objectives
PATIENTADVISORYBOARDTheVoiceofPatientswithinEURO-NMD
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases
Patient Advisory
Board
GOVERNANCE: Ensure patient
representation in all boards and
groups GUIDELINES: Ensure that they
meet patient needs
RESEARCH: Formulate priorities
EVALUATION: Feedback on
quality indicators and
recommendations ETHICS: From data
management to handling
complaints
TRAINING AND DISSEMINATION:
Develop educational
materials and disseminate information
INFORMATION: Inform patients
and professionals
TRANSPARENCY: Improve
transparency of information
PATIENTADVISORYBOARDTheVoiceofPatientswithinEURO-NMD
Activities
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases
PATIENTADVISORYBOARD
TheVoiceofPatientswithinEURO-NMD
6EuropeanPatientAdvocacyGroup(ePAG)representatives(electedamongmemberorganisationsofEURORDIS):• Chair:FrançoisLamy(AFM-Téléthon)• MarisolMontolio(DuchenneParentProjectSpain)• Jean-PhilippePlançon(FrenchAssociationagainstPeripheralNeuropathies)• EvyReviers(ALSLigaBelgium)• PieroSantantonio(MITOCONONLUS)• JuditVaradineCsapo(AngyalszarnyakHungarianMuscleDystrophyAssociation)
4InvitedAssociations:• RiaBroekgaarden(SpierziektenNederland,NeuromuscularAssociationNetherlands)• NicBungay(MuscularDystrophyUK)• MadelonKroneman(SpierziektenNederland,NeuromuscularAssociationNetherlands)• IngeSchwersenz(DeutscheGesellschaftfürMuskelkranke)
NB:ThereisnodistinctionbetweenePAGrepresentativesandinvitedassociationsintermsofvotingrightsorboardrepresentation.
4
Membership
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases
PatientshavetobeadequatelyrepresentedinallBoardsandGroups:• 1chairrepresentingthePABintheExecutiveCommittee;• Atleast1PABmemberineachSpecialistGroup(SpecialistDisease
GroupsandCross-cuttingSpecialistGroup);• 1patientrepresentativeco-chairingtheEthicsCommittee;• 1patientrepresentativeco-chairingtheEducationBoard.ThechairorthePABisafullmemberoftheExecutiveBoard.AllPABmembersarefullmembersoftheNetworkBoard.PatientrepresentationalsohastobeensuredineachHCP.
5
GovernanceoftheERN
PATIENTADVISORYBOARDTheVoiceofPatientswithinEURO-NMD
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases
ThePatientAdvisoryBoardmeetsmonthlybyconferencecall,andtwiceayearinperson.• In2017,3conferencecallswereheldsincetheendofJune+1in-
personmeeting.• Topicsdiscussedhaveincluded:
– TermsofreferencefortheERN,– TermsofreferenceforPABmembers,– RecruitmentofPABmembersandpatientrepresentatives,– Appointmentprocedure(termsofreference,lettersofendorsement),– InvolvementofpatientrepresentativesinSpecialistGroupsandBoards,– AnindexationofeachERNproductionontheMyobasedatabase.
• Reportsareissuedaftereachconference.
6
Procedure
PATIENTADVISORYBOARDTheVoiceofPatientswithinEURO-NMD
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases
ThePABnominatesatleast1patientrepresentativeforeachoftheSpecialistGroupsandAdvisoryBoards.Patientrepresentativesareexpectedto:• Helpensurethatactivitiesreflecttheneedsofpatients.Ex:playanactive
roleinthedevelopmentofclinicalandspecialisedsocialservicesguidelinesandoutcomemeasures;
• Voicepatientconcernsandexpectationswithintheremitoftheirgroup;• Providefeedbackbasedonpatientexperience;• Remainindependent,irrespectiveoftheirpersonalsituation,pathology
and/orassociation.
7
PATIENTADVISORYBOARDTheVoiceofPatientswithinEURO-NMD
PatientRepresentatives
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases
EthicsCommittee Marie-ChristineOuillade(co-chair)–MadelonKroneman–EvyReviers
AdvisoryCommittee DimitriosAthanasiou–AlejandraPereda
EducationalBoard Jean-PhilippePlançon(co-chair)–BobbyAncil
ResearchBoard MarisolMontolio–SergeBraun
MuscleDiseases FrançoisLamy–MarisolMontolio–JuditVaradineCsapo–JoaquimBrites–GerardWellenberg–DianaKim–MadelonKroneman
PeripheralNerveDiseases Jean-PhilippePlançon–DanielTanesse–FrançoisePelcot
NeuromuscularJunctionDefects
MargueriteFriconneau
MitochondrialDiseases PieroSantantonio–EmmaDelRey–FranciscoJavierPérez-Minguez
MotorNeuronDiseases EvyReviers–MenciadeLemusBelmonte
NeuromuscularImaging JacquesSalama
Neurophysiology SandrineSegovia-Kueny–DominicWells
Genetics FrançoiseRouault–MartinBobrow
8
ListofPatientRepresentatives
PATIENTADVISORYBOARDTheVoiceofPatientswithinEURO-NMD
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases
Disseminationofinformation• FromtheERNandSpecialistGroupstothePAB:scheduleof
meetings,topicsofdiscussion,planning.• FromthePABtothedifferentbodiesoftheERN.• Forexampleby:
Ø EnsuringpatientrepresentationineachHCPØ IncludingaPABnewsletterintheEURO-NMDnewsletter.
Enhancingcooperation• Howtobetterintegratepatientorganisationsandpatient
representativesintheERNandinSpecialistGroupsandBoards?• Howtocooperatemoreeffectivelyandefficiently?• HowtostrengthenrelationsbetweenpatientsandHCP?
9
PATIENTADVISORYBOARDTheVoiceofPatientswithinEURO-NMD
Discussionpoints
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases 10
PABMeetinginFreiburg-299/11/2017