PATIENT ADVISORY BOARD The Voice of Patients...

30/11/2017 SessionOne

PATIENTADVISORYBOARDTheVoiceofPatientswithinEURO-NMD

Buildingbridgesandbreakingbarriersinrareneuromusculardiseases

MainobjectiveofEURO-NMD:Ø  BuildabridgebetweenEURO-NMDandtherare

neuromuscularpatientcommunity:•  Ensurethatpatientneedsareincludedinthestrategicand

operationaldeliveryoftheERN•  Helpimproveaccesstohighqualitydiagnosis,careand

treatmentMainobjectiveofthePABwithinEURO-NMD:Ø  Ensuretrueandequitablerepresentationofallthepatient

voiceintheERN

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Objectives



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


Activities


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.

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Membership


PatientshavetobeadequatelyrepresentedinallBoardsandGroups:•  1chairrepresentingthePABintheExecutiveCommittee;•  Atleast1PABmemberineachSpecialistGroup(SpecialistDisease

GroupsandCross-cuttingSpecialistGroup);•  1patientrepresentativeco-chairingtheEthicsCommittee;•  1patientrepresentativeco-chairingtheEducationBoard.ThechairorthePABisafullmemberoftheExecutiveBoard.AllPABmembersarefullmembersoftheNetworkBoard.PatientrepresentationalsohastobeensuredineachHCP.

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GovernanceoftheERN



ThePatientAdvisoryBoardmeetsmonthlybyconferencecall,andtwiceayearinperson.•  In2017,3conferencecallswereheldsincetheendofJune+1in-

personmeeting.•  Topicsdiscussedhaveincluded:

–  TermsofreferencefortheERN,–  TermsofreferenceforPABmembers,–  RecruitmentofPABmembersandpatientrepresentatives,–  Appointmentprocedure(termsofreference,lettersofendorsement),–  InvolvementofpatientrepresentativesinSpecialistGroupsandBoards,–  AnindexationofeachERNproductionontheMyobasedatabase.

•  Reportsareissuedaftereachconference.

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Procedure



ThePABnominatesatleast1patientrepresentativeforeachoftheSpecialistGroupsandAdvisoryBoards.Patientrepresentativesareexpectedto:•  Helpensurethatactivitiesreflecttheneedsofpatients.Ex:playanactive

roleinthedevelopmentofclinicalandspecialisedsocialservicesguidelinesandoutcomemeasures;

•  Voicepatientconcernsandexpectationswithintheremitoftheirgroup;•  Providefeedbackbasedonpatientexperience;•  Remainindependent,irrespectiveoftheirpersonalsituation,pathology

and/orassociation.

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PatientRepresentatives


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

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ListofPatientRepresentatives



Disseminationofinformation•  FromtheERNandSpecialistGroupstothePAB:scheduleof

meetings,topicsofdiscussion,planning.•  FromthePABtothedifferentbodiesoftheERN.•  Forexampleby:

Ø  EnsuringpatientrepresentationineachHCPØ  IncludingaPABnewsletterintheEURO-NMDnewsletter.

Enhancingcooperation•  Howtobetterintegratepatientorganisationsandpatient

representativesintheERNandinSpecialistGroupsandBoards?•  Howtocooperatemoreeffectivelyandefficiently?•  HowtostrengthenrelationsbetweenpatientsandHCP?

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Discussionpoints

Buildingbridgesandbreakingbarriersinrareneuromusculardiseases 10

PABMeetinginFreiburg-299/11/2017

PATIENT ADVISORY BOARD The Voice of Patients...

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