about the eular annual european conference of pare€¦ · and panel discussion and, for the first...

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2015 EULAR Annual European Conference of PARE objectives 1. To inspire, educate and empower delegates and their national organisations to develop and execute campaigns around the topic of ‘Taking Control’ patient centred care through: • providing expert keynote speakers; • sharing best practices; • developing practical materials that can be adapted for national activities and meet national needs. 2. To make delegates and their national organisations aware and receptive to the benefits of regional, European and international collaboration by: • clarifying and promoting the activities and relevance of EULAR; • demonstrating how EULAR can support the interests of its member organisations at a national and local level. Arthritis Ireland objectives 3. Raise awareness of rheumatic and musculoskeletal diseases (RMDs) and the work of Arthritis Ireland with politicians / the Irish government. 4. To use the event to reinforce support for our volunteer base and ensure greater support and engagement from new volunteers. About the EULAR Annual European Conference of PARE: Since 1997 a dedicated conference has been held for EULAR member organisations of PARE, which is hosted by a different country each year. This year’s Annual Conference was held in Malahide, County Dublin, Ireland and was hosted by Arthritis Ireland. There were 150 delegates from 33 countries in attendance with over 30 young representatives (under 35 years of age). There were 25 attendees from Arthritis Ireland, with the majority of them being volunteers who were invaluable to the smooth running of the conference. The overall conference topic followed the World Arthritis Day 2015/2016 theme of Patient Centred Care, ‘Taking Control’, with eight workshops on offer, each running twice, allowing delegates the opportunity to attend four different workshops. The workshops covered a range of hot topics including e-health services, self- management, the EULAR recommendations, campaigning for patient choice, skills training, shared decision making and two youth workshops. REPORT The Task Force responsible for planning this year’s conference: Hans Bijlsma, EULAR Treasurer Snezhana Bozhinova, 2016 Bulgarian Team Peter Boyd, 2015 Irish Team Stephanie Casey, 2015 Irish Team John Church, 2015 Irish Team Frane Grubišić, 2014 Croatian team Marios Kouloumas, EULAR Vice President representing PARE Christina Opava, EULAR Vice President representing Health Professionals in Rheumatology Ingrid Pöldemaa, PARE Board and representative of young people Maarten de Wit, Task Force member 18th EULAR Annual European Conference of PARE, Dublin, Ireland, 24th – 26th April 2015 150 delegates attended the conference in Dublin NEXT

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Page 1: About the EULAR Annual European Conference of PARE€¦ · and panel discussion and, for the first time, a selection of the workshops and feedback sessions after Friday and Saturday’s

2015 EULAR Annual European Conference of PARE objectives1. To inspire, educate and empower delegates and their national

organisations to develop and execute campaigns around the topic of ‘Taking Control’ patient centred care through:

• providingexpertkeynotespeakers; • sharingbestpractices; • developingpracticalmaterialsthatcanbeadaptedfornational

activities and meet national needs.

2.Tomakedelegatesandtheirnationalorganisationsawareandreceptivetothebenefitsofregional,Europeanandinternationalcollaborationby:

• clarifyingandpromotingtheactivitiesandrelevanceofEULAR; • demonstratinghowEULARcansupporttheinterestsofitsmember

organisations at a national and local level.

Arthritis Ireland objectives3.Raiseawarenessofrheumaticandmusculoskeletaldiseases(RMDs)

andtheworkofArthritisIrelandwithpoliticians/theIrishgovernment.

4.Tousetheeventtoreinforcesupportforourvolunteerbaseandensure greater support and engagement from new volunteers.

About the EULAR Annual European Conference of PARE: Since 1997 a dedicated conference has been held for EULAR member organisations of PARE, which is hosted by a different country each year. This year’s Annual Conference was held in Malahide, County Dublin, Ireland and was hosted by Arthritis Ireland.

There were 150 delegates from 33 countriesinattendancewithover30youngrepresentatives(under35yearsofage).Therewere25attendeesfromArthritisIreland,withthemajorityofthembeingvolunteerswhowereinvaluabletothesmooth running of the conference.

The overall conference topic followed the WorldArthritisDay2015/2016themeofPatient Centred Care, ‘Taking Control’, witheightworkshopsonoffer,eachrunningtwice,allowingdelegatestheopportunitytoattendfourdifferentworkshops.The workshopscoveredarangeofhottopics including e-health services, self-management,theEULARrecommendations,campaigningforpatientchoice,skillstraining,shareddecisionmakingandtwoyouthworkshops.

REPORT

The Task Force responsible for planning this year’s conference:

Hans Bijlsma,EULARTreasurer

Snezhana Bozhinova,2016BulgarianTeam

Peter Boyd,2015IrishTeam

Stephanie Casey,2015IrishTeam

John Church,2015IrishTeam

Frane Grubišić, 2014 Croatian team

Marios Kouloumas,EULARVicePresident representingPARE

Christina Opava,EULARVicePresident representingHealthProfessionalsinRheumatology

Ingrid Pöldemaa,PAREBoardandrepresentativeofyoungpeople

Maarten de Wit,TaskForcemember

18th EULAR Annual European Conference of PARE,

Dublin, Ireland,

24th – 26th April 2015

150 delegates attended the conference in Dublin

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Page 2: About the EULAR Annual European Conference of PARE€¦ · and panel discussion and, for the first time, a selection of the workshops and feedback sessions after Friday and Saturday’s

Inhisopeningaddress, Marios Kouloumas, EULARVicePresidentrepresenting PARE,welcomed the

delegatesandspeakers,announcing that, following the success of live streamingtheplenarysessionsatthe2014conferenceinZagreb,thisyearthescopeofthelivestreamingwasbeingextendedtoincludemoreoftheconference.

The opening addresses, presentations andpaneldiscussionand,forthefirsttime,aselectionoftheworkshopsandfeedbacksessionsafterFridayandSaturday’sworkshops,werealllivestreamed and viewed in total 130 times online.FurthermorethesesessionswerealsomadeavailableonYouTubefollowingtheeventandby29Mayhadbeenviewed 517 times.

Thisyear,theplenarysessionsalsofeatured a Twitter wall, allowing delegates and the external audience toengageviaTwitterusingtheofficialconference hashtag #pare2015. Twitter engagement during the conference washigh;morethan1,250tweetswereshared during the conference, reaching apotentialaudienceofapproximately152,647people.

“Thank you EULAR for streaming some of your workshops. #pare2015”

“I have arthritis but arthritis doesn’t have me.” the video explains the burden of

arthritis fantastically #pare2015”

Ahighlightoftheconferencewastheattendance of guest of honour, Ireland’s Minister for Health, Dr. Leo Varadkar, whotooktimeoutofhisbusyscheduletojointheopeningsession.

Prof. Hans Bijlsma,EULARTreasurer,deliveredthewelcomeonbehalfofEULAR,providingabriefhistoryofEULAR,itsmissionandanintroductiontosome of its activities.

John Church,CEOArthritisIreland,the host organisation, extended his thankstoMinisterVaradkarforattendingthe opening of the conference and highlighted the prevalence of rheumatic andmusculoskeletaldiseases(RMDs)inEuropeandtheeconomicimpacttheycanhaveiftheyarenotappropriatelymanaged. He stressed the important rolepatientgroupscanplayinthisthroughprovidingadvocacy,supportandeducation,andtooktheopportunitytoshowcasesomeoftheimpressivework

thatArthritisIrelanddoesforpeoplelivingwithRMDsinIreland.

MinisterVaradkarextendeddelegatesawarmwelcometoIrelandandformallydeclared the conference open. His compelling speech highlighted the importance of dedicating resources and effortstomanagingRMDsinIreland.TheMinisteremphasisedtheroleofpatientcentred care and discussed the cost-effectivebenefitsofself-management,especiallyinchronicconditionssuchasRMDs.

“We have to measure to make sure that policies are making a difference”

Ireland’s Minister for Health #PARE2015”

ThesubsequentpresentationsbyClaireKinneavyandProf.HansBijlsmaintroduced and reinforced the importance of patient centred care, echoing the theme of the conference.

Arthritis Ireland volunteers offered great support throughout the Conference and were easy to identify in their orange t-shirts!

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Guest of honour, Ireland’s Minister for Health, Dr. Leo Varadkar

Click on the above link to view the “I have arthritis but arthritis doesn’t have me.” video

The 2015 Annual Conference

welcomes Ireland’s Minister for Health,

embraces new media and sets its

focus on patient centred care

REPORT 18th EULAR Annual European Conference of PARE, Dublin, Ireland, 24th – 26th April 2015

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Claire Kinneavy,ArthritisIrelandVolunteerandMasterTrainerinChronicDiseaseSelf-Management,gaveanemotional and powerful presentation on ‘RA self-management – a patient perspective’. Claire shared her personal experience of diagnosis and how she managed to reclaim her life, including the benefitsshehasgainedasavolunteerwithalocalArthritisIrelandbranchbeforebecominginvolvedinitsself-management courses.

“Kinneavy says self management helped put ‘arthritis in the back seat’ rather than it being ‘ an interfering front seat driver’

#PARE2015”

Prof. Hans Bijlsma,ProfessorofRheumatology,UtrechtandAmsterdam,NetherlandsandEULARTreasurer,presented ‘An introduction to patient centred care’, discussing threedifferentdefinitions:(i)nodecision

abouttreatmentofapatientwithoutthepatient,(ii)everytreatmentmodalityputsthepatientinthecentreand(iii)personalised treatment. Hans gave a comprehensive overview of the differencebetween‘TreattoTarget’and‘PersonalisedMedicine’andemphasisedthe role of patient organisations in addressingtheinformationgapbetweendoctors and patients.

Panel discussion

FollowingtheopeningaddressesandpresentationsonFridaymorning,Marios Kouloumasmoderatedalivelyinteractive panel discussion with Prof. Hans Bijlsma and Claire Kinneavy, whowerejoinedbyBoryana Boteva (VicePresident,BulgarianOrganisationforPatientswithRheumaticDiseases),and Prof. Christina Opava(EULARVicePresidentrepresentingHealthProfessionalsinRheumatology).Thepanel agreed on the importance of patient centredcareanddiscussedinequalitiesindifferentcountriesacrossEurope,

withBoryanaexplainingthatinBulgariathereisasyetlittleornoknowledgeorunderstanding of the concept.

Workshops, feedback and voting statements

InteractivefeedbacksessionswereheldfollowingtheworkshopsonFridayandSaturday.Forthefirsttime,workshopleaderspresentedtheirfeedbackusinganumberofstatementsrelatingtothediscussionsintheirworkshops.Delegatesweretheninvitedtovoteonwhethertheyagreedordisagreedwith,orwereunsurehowtheyfeltabouteach statement. This interactive voting session involved delegates holding up green(agree),orange(disagree)orwhite(unsure)votingcards.

John Church moderated the informal interactiveworkshopfeedbacksessiononFriday.AsimilarsessionwasheldonSaturday,moderatedbyDiana Skingle, ChairpersonoftheEULARStandingCommitteeofPARE.

18th EULAR Annual European Conference of PARE, Dublin, Ireland, 24th – 26th April 2015 REPORT

John Church moderated the interactive feedback session following Friday’s workshops

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Prof. Hans Bijlsma introduced the topic of patient centred care

Claire Kinneavy gave a powerful and motivational presentation

Marios Kouloumas moderated a lively panel discussion

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For the first year delegates voted on whether they agreed, disagreed or were unsure on each of the workshop feedback statements

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Policy and campaigning

OnFriday,theimportanceoftheEULARrecommendations for use in empowering peoplewithRMDsandinEULARpolicyworkwashighlightedbyDr Maarten de Wit,TaskForcemember,inaworkshopon the ‘Dissemination of EULAR recommendations’.Theworkshopwasrun with support from Nele Caeyers and Prof. Christina Opava and introduced the Guide to disseminating the EULAR recommendations,whichwillbecomeavailablelaterin2015.DelegateswereaskedtocomparescientificandlayversionsoftheEULARrecommendationsandinterestingly,foundithardtoseethe difference. The consensus was that thelayversionsarestillrelativelyhardtounderstandandthatfurtherworkisneededto ensure these recommendations are accessibleandpracticalforusebynationalorganisationsandpeoplewithRMDs.

Delegatessuggestedthatnon-expertpatientscouldbeinvolvedinthe

developmentofthelayversionsof therecommendationstoensurethey are clear to all.

Nele Caeyers,CEOofReumaNet,providedacasestudyfromBelgium,highlightingthedifficultiesfacedwhenorganisations need to translate the recommendationsintolayversions,andthebenefitsoflayversionsbeingprovidedbyEULAR.Nelewentontoillustrate how the recommendations are disseminated through different platforms inBelgium,includingviatheReumaNetwebsite,socialmediachannelsandmagazines.

Delegatesformedintothreesub-groupstodiscuss(i)whatcanbedone wheretherearenolayversionsoftherecommendations,(ii)whatorganisationscandowiththelayversionsoftherecommendations,and(iii)howorganisations can disseminate the recommendations.

The three voting statements that were presentedduringthefeedbacksessionwere:

•EULARshouldprovideanEnglishlayversion for each of the recommendations it develops (unanimous agreement)

•Ifavailable,ourorganisationwouldcertainlytranslateanddisseminatethelayversionsofEULARrecommendations (majority agreed)

•Layversionsshouldnotonlytargetpatients,butalsorheumatologistsandhealth professionals (majority agreed)

OnSaturday,anotheraspectofhowpatient organisations can get involved inpolicyworkwasdemonstratedbyNeil Betteridge,LiaisonOfficer,PublicAffairsEULAR,inhisworkshopon‘Campaigning for patient choice’, supportedbyMarios Kouloumas. The workshopstartedbydiscussingwhatismeantbypatientchoiceandhowitrelatestopersoncentredcare.MariosKouloumasdeliveredacasestudyonacampaignrunbytheCyprusLeagueAgainstRheumatism(CYPLAR)onpatientandphysicianchoiceinmedication,inparticulartheprescriptionofbiosimilarsversusbiologics.MariosoutlinedtheactionstakenbyCYPLARtoensurepeoplewithRMDsinCypruswouldcontinue to have access to the most appropriate treatment and were not automaticallyswitched,interchangedorsubstitutedwithabiosimilarongroundsofcost.HedescribedthestrategiesadoptedbyCYPLAR,howthesewereimplementedand the outcomes of the campaign.

NeilusedhisUKcasestudytodemonstrate two aspects of patient choice: availability, dealing with campaigns around the healthcare supportandservicesrequiringpoliticalchange, and accessibility, involving campaigns to ensure individuals have helptoaccesswhatisavailable.

Thesub-groupsaddressedtwokeyquestions,(i)whatisavailableinyourcountryand(ii)howeasyitistoaccessthese services or support. The groups brainstormedideasforhoworganisationscouldusecampaigning,advocacyworkorawareness-raisingactivitiesto

Marios Kouloumas feeding back on the discussions in his sub-group

Dr Maarten de Wit leading discussions

REPORT 18th EULAR Annual European Conference of PARE, Dublin, Ireland, 24th – 26th April 2015

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reducethebarrierstoavailabilityandaccessibility.Itwasemphasisedthatempoweringpatientstoknowwhatexistsandpsychologicallyengagingthemtobewillingtofightforit,iskeytoimplementingchange.Patientgroupsandpeersupportcanplayavitalroleinhelpingwiththis.

The four voting statements that the delegates were presented with were:

•Societylovescauseswhichhelpchildren:weneedtobemoreruthlessinusingkids’experiencestoattractsupport (split vote; the majority agreed, but about a third were unsure or disagreed)

•PAREmembers’successinpromotingthe‘empoweredpatient’modelhasturned non-assertive patients into victims (majority disagreed)

•Therangeofcomplexnewtherapiesavailablemakeschoosingtherightoneincreasinglydifficult(majority disagree, but about a third were unsure or disagreed)

•HavinganRMDmakesyoustronger(majority agree, but a few were unsure or disagreed)

Skills training and learning to engage with mobile health

Epp AdlerledthefirstskillstrainingworkshopofferedataEULARAnnualConference, which gave delegates the opportunitytolearn‘How to successfully chair a meeting or moderate a session’.Thisworkshopwasnotonlydesigned to help attendees to enhance theirrolewithintheirorganisation,butalso to train up future moderators and workshopleadersforEULARactivities.

Eppledanengagingbrainstormonwhatcanmakeameetinggoodorbad,with delegates suggesting factors such as positive atmosphere and reaching agoal,orlackoftimemanagementandunsuitablenumberofparticipantsrespectively.Thegroupmovedontodiscusswhatmakesagoodleaderandhowbesttoorganiseameeting.

Epphighlightedtheimportanceoflearningthedifferencebetweenmanagingthingsandleadingpeople.Anotherkeylearningwas that leading is an attitude, as well as askill.Goodattitudecancompensateforalackofskill,butgoodskillsdonotcompensateforabadattitude.

The voting statement that culminated fromthisskillstrainingworkshopwas:

•SkillstrainingshouldbecomeamoreprominentfeatureoftheEULARAnnualEuropeanConferenceof PARE(majorityagreed)

“You lead people, you manage things. Great skills training by Epp Adler.

#pare2015”

Inlinewiththetechnologicaladvancesbeingusedtomaketheconferencemoreaccessibleandengaging,Prof. Loreto Carmona,Vice-PresidentofOpenReumaandTechnicalSecretaryoftheSpanishLeagueAgainstRheumatism,(LIRE),facilitatedaworkshoponthe‘Role of organisations in the development of health apps and e-health services for people with RMDs’ with support from Dr Susanne Pettersson and Marios Kouloumas.

Theworkshopranthroughvariousdifferenttypesofe-healthservices,suchasePrescribing,virtualhealthcareteams,mHealth and telemedicine. These were then expandedwithlivelydiscussionaroundtheadvantagesandchallengesposedbyhealth apps and e-health services.

Dr Susanne Pettersson presented an interviewstylecasestudyonherworkwithe-healthprojectsrelatedtoRMDsattheKarolinskaInstitute,includinganapp to help non-diagnosed people gain a quickerdiagnosisandaqualitycareappto monitor patient-reported outcomes prior to consultation.

Threesub-groupsconsideredchallengesand solutions associated with e-health servicesandlackofmoneywasidentifiedasthekeychallenge.

18th EULAR Annual European Conference of PARE, Dublin, Ireland, 24th – 26th April 2015 REPORT

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Neil Betteridge (top right hand corner) engaged in a lively discussion with his sub-group

Dr Susanne Pettersson provided a case study on the use of e-health projects

Delegates fed back from their sub-group sessions

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REPORT 18th EULAR Annual European Conference of PARE, Dublin, Ireland, 24th – 26th April 2015

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The voting statements presented in the plenarysessionwere:

•DoyouthinkweshoulddevelopEULARrecommendationsforthedevelopment of e-health services and apps? (majority agreed)

•WouldyouuseanappthattellsyouwheretofindresourcesusefulforRMDaroundyou?(majority agreed, but a few unsure and disagreed)

“Regions could work on shared ehealth Apps to share the costs #pare2015”

Patient centred care

FollowingonfromClaireKinneavy’sopening presentation, Gráinne O’Leary, HeadofServiceDevelopmentforArthritisIreland,facilitatedaworkshopon ‘Exploring what steps national organisations can take to help people self-manage’. Claire Kinneavy supportedGráinneinthisengagingworkshopthatcomparedthebenefitsand challenges of conventional self-management courses with an online model.TheteamfromArthritisIrelandpresentedtheirbrandnewonlineself-managementtoolasacasestudyandgave an online demonstration. David McLean,whorunsanumberofhighlysuccessful e-learning modules for health professionals, and who developed the technologyfortheArthritisIrelandonlineself-management course, provided workshopattendeeswithtechnicalconsiderations and insights.

The delegates were then split into threesub-groupsthateachidentifieda

topic from the discussion, for example resourcesorcost,andthenbrainstormedthebarriersrelatedtothisissueaswellassome potential solutions.

The voting statements from this workshopwere:

•Onlineself-managementprogrammesarethewayofthefuture(majority agreed, but a few disagreed)

•EverypersondiagnosedwithanRMDshouldbeofferedself-managementtraining (unanimously agreed)

“Every person diagnosed with an RMD should be offered self-management

training- Couldn’t agree more #PARE2015 #lifechanging”

Prof. Anne Stiggelboutledaworkshopon ‘How organisations can help to educate people with RMDs and improve shared decision making’, with the support of Dr Maarten de Wit and Prof. Christina Opava. This workshopofferedaversiontailored for more experienced organisations and another for less experienced organisations.Theworkshopformoreexperienced organisations concentrated on gaining insights into the tools and implementation strategies that could helpincreaseshareddecisionmaking.Theworkshopforlessexperiencedorganisations ascertained the current levelsofshareddecisionmaking,andthenbrainstormedthebarrierstoimplementation and the roles patient organisationscantaketosupportimplementation.

Akeyconclusionfromtheworkshopswasthatanyissuesinvolvingshareddecisionmakingbetweenpatientsanddoctorsshouldnotbeaddressedseparately,butinconjunction,sothatallpartiesareinvolved, aware and well-informed.

Thestatementsbroughtbacktotheplenaryforvotingwere:

•ItisuptopatientstomakeSharedDecisionMaking(SDM)happen(majority disagreed, but some agreed)

•TherearemanytoolstosupportSDM,buttheyneedtobebetterimplemented(unanimously agreed)

“Shared decision making results in better decisions on care, fewer doctor visits,

better satisfaction. #pare2015”

Youth

Thefirstyouthworkshop,whichlookedat the ‘Young PARE strategy – from plan to action’,wasledbyPetra Bednarova,volunteerandboardmemberoftheSlovakLeagueAgainstRheumatism(SLAR),whojoinedtheYoungPAREtaskforceinMarch2014andwillbecomeitsfirstchair.ShewassupportedbyLinda van Nieuwkoop, chairoftheDutchorganisationYouth-R-Well.com, and Jeanette Andersen, who wasrepresentingLupusEurope.

PetraandLindabegantheworkshopbyrunningthroughtheeightYoungPAREstrategicobjectives,discussingactionablestepsforeachone.Delegateswerethengiventheopportunitytochoosethethreestrategicobjectivesofmostinteresttotheir

Prof. Anna Stiggelbout in her workshop on shared decision making

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Gráinne O’Leary sharing the ideas from her sub-group

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18th EULAR Annual European Conference of PARE, Dublin, Ireland, 24th – 26th April 2015 REPORT

Linda van Nieuwkoop presenting in the first Youth workshopDiana Skingle giving a ‘High 5’

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organisations,andthreesub-groupsthendiscussed each of these in more detail.

Inthefirstworkshop,thethreeprioritisedstrategicobjectiveswere,(i)by2020,educationalinstitutionsacrossEuropearemoreflexibleandassistiveinsupportinghighqualityeducationofyoungpeoplewithRMDs,(ii)thereismoreawarenessinsocietyofthespecificneedsofyoungpeoplewithRMDsandemployers,and(iii)otherstakeholdersaremoreawareoftheneedsofyoungpeoplewithRMDsandprovidemoresupporttoyoungpeopletofindasuitablejob.

Inthesecondversionofthisworkshopthethreeprioritisedobjectiveswere(i)by2020,thereismoreawarenessinsocietyofthespecificneedsofyoungpeoplewithRMDs,(ii)healthcareservicesareinterdisciplinary,more holistic and focused on the need for tailor-made information, including socialandpsychologicalsupportforyoungpeoplewithRMDsand(iii)everyEuropeancountryhasanactivenationalyouthgroupforyoungpeoplewithRMDs.Thesub-groupsconsideredwhatstepscouldbetakentoimplementactivitiesbasedontheYoungPAREstrategyandwhatEULARandYoungPAREcouldprovidetohelp.

Thethreekeymessagesthatevolvedfromtheworkshopswere(i)nothingabouttheyouthwithouttheyouth,(ii)empowertocreateyoungleadersand(iii)getyouthorganised.

The voting statements presented during theplenarywere:

•By2020allPAREmemberorganisationsshouldhaveayouthgroup (unanimous agreement)

•Thebestwaytocreateawarenessistohaveambassadors(youthleaders)whotalkabouttheirpersonalexperience(majority agreed)

Ingrid Põldemaa, with the support of Epp Adler and Irene Murphy, ran the secondyouthworkshopon‘Establishing the young PARE network’.IngridprovidedanoverviewofthehistoryoftheYouthGroupandsummarisedthekeyfindingsfromtheEuropeanYouthSurvey.

EppAdlerpresentedacasestudyonEUErasmus+programmeinEstonia,mentioningtheNewEUEducationProgramme(2014-2020)andexamplesoffundedactivities,suchasYouthExchangeandYouthWorkerMobility.

Delegatessplitintosub-groupstodevelopideasfor(i)aninternationaleventand(ii)for leader training, including how to go aboutfundingtheseactivitiesandhowEULARcouldhelp.

Thevotingstatementsforthisyouthworkshopwere:

•DevelopinginternationalyouthworkandusingEUErasmus+programmeisanunderusedpossibilitytoempowernationalEULARPAREmembers(unanimously agreed)

•ThereisaneedintheEULARPAREnetworktoincreasetheknowledgeandskillsoftheirnationalmembersabouttheavailabiltyofdifferentfundingopportunities (unanimously agreed)

Closing the official conference programme

Marios Kouloumas and Diana Skingle presented the conference closing remarks,thankingalldelegatesfortheirimportantcontributiontotheworkshops.Delegateswereencouragedtousetheirworkbookstodisseminatewhatthey had learned during the conference to their organisations.

ToshowsupportfortheWorldArthritisDaycampaign‘It’sinyourhands,takeaction’,MariosandDianainviteddelegatestoturntotheirneighboursandgivethema‘High5’.Thecampaigninvolvesspreadingagesturethatbringstwo hands together with an uplifting action:theWADHigh5.TheaimistotakesocialmediabystormbyowningHigh5sacrossTwitter,Facebook,Instagramandallotherchannelswiththehashtag#WADHigh5.

“Interesting topics, useful information and interesting young people!”

Networking and social

Withmanydelegatesnewtotheconference,anicebreakerwasheldonThursdayevening.Thisprovidedafunwaytoengagewithnewpeopleandfindoutmoreabouttheirroleandorganisations, as well as a few light-heartedpersonalfacts.Thisnetworkingsessionwaswellattendedandenjoyed.

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OnFridayeveningdelegateshadtheopportunitytoparticipateinamultimediaexhibition.Therewere19postersand4 videos presented, all of which were inspiringandinformative.Delegateswereencouragedtotakepartinthemultimedia‘rally’,challengingthemtomatcheachexhibittoafactaboutthe campaign provided in a list. This encouraged delegates to read the posters,watchthevideosandaskthepresentersabouttheircampaigns.

“The multi-media exhibition was pretty good. I liked the ‘game’ of determining

which poster/video fitted the descriptions. This got me involved in reading/viewing the multimedia and in asking more questions,

as well as meeting more delegates.”

PrizeswereawardedtothepostersfromDenmark,forthemostsuccessful/innovative campaign around the theme ofpatientcentredcare,presentedbyJulieKofoed,fromIrelandforthemostsuccessful/innovativecampaign(opentheme),presentedbyJohnChurchandhisteam,andfromLupusEuropeforthemostbeautifulposter(opentheme),presentedbyKatherineWheeler.Eachofthe poster winners was awarded a prize at the gala dinner.

The gala dinner was held at the spectacularandhistoricDublinCastlewhere delegates were treated to an upliftingperformanceofIrishmusicfollowedbyamesmerisingdisplayof Irishdancing.Thegaladinnerincluded

speeches from Marios Kouloumas, Diana Skingle and John Church, who thankedeveryoneforattendingandmakingthe conference such a huge success.

“I have to say that has been one of the best conferences that I have attended - well done and thanks @eular_org and @

Arthritisie! #pare2015”

“We got ideas, tips & contacts. Now make it count! Waiting to see different projects

come to life after #pare2015.”

AninformalnetworkingsessionwasheldfordelegatesonSundaymorning,givinganothergreatopportunitytoshareknowledge,experiencesandcontactdetailstohelpthemstayintouch!

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Sofia, Bulgaria, the venue for the 2016 Conference

The next EULAR Annual European Conference of PARE willbeheldinSofia,Bulgariafrom15–17April2016andhostedbytheBulgarianOrganisationforPatientswithRheumaticDiseases(BOPRD).

Katherine Wheeler presenting the Lupus Europe poster that was awarded a prize for the most beautiful poster (open theme)

Julie Kofoed presenting her winning poster

There was very positive feedback from delegates who attended this year

REPORT 18th EULAR Annual European Conference of PARE, Dublin, Ireland, 24th – 26th April 2015

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Gala Dinner in Dublin Castle