D1.3 - Material for education and clinical implementation

1 A new, in e disciplina y, mul i-s akeholde Eu opean ne wo k o imp o e heal hca e se ices, esea ch and ou comes o Adolescen s and Young Adul s wi h cance . STRONG AYA – No. 101057482 – D1.3 2 Deli e able Repo WP1: Ma e ial o educa ion and clinical implemen a ion Deli e able D1.3 Due da e o deli e able: 31/03/24 Ac ual submission da e: 27/03/2024 P ojec : STRONG-AYA Lead Con ibu o Nicole Collaço, Anne-Sophie Da ling on Email n.b.collaco@so on.ac.uk A.Da ling on@so on.ac.uk O he Con ibu o s The Pa ien Ad iso y Boa d STRONG AYA conso ium Emails Due da e 31.3.24 Deli e y da e 27.3.24 Deli e able ype R Dissemina ion le el PU Desc ip ion o Wo k Ve sion Da e V1.0 27/03/2024 STRONG AYA – No. 101057482 – D1.3 3 Desc ip ion: This epo includes an o e iew o he educa ional lea le s and ecommenda ions o pa ien ec ui men , heal hca e p o essional and s a egic leade s/commissione s engagemen . Publishable summa y The aim o Wo k Package 1 (WP1) o STRONG AYA is o de elop a Co e Ou come Se (COS) o adolescen s and young adul s (AYAs) wi h cance . Wi h he ini ial COS domains and me ics nea ing inalisa ion, WP1 is u ning i s a en ion o deli e able 1.3: da a collec ion and implemen a ion. To encou age pa icipa ion in his nex phase o he p ojec , clea and concise educa ional ma e ials (e.g. lea le s) a e essen ial. We desc ibe he de elopmen o educa ional lea le s o suppo ec ui men o he STRONG AYA p ojec and ecommenda ions o engagemen wi h pa ien s, heal hca e p o essionals (HCPs) and s a egic leade s/commissione s. De eloped collabo a i ely wi h inpu om pa ien s, HCPs and s a egic leade s, hese lea le s a e designed wi h an in o mal one o pa ien s, a p o essional one o heal hca e p o essionals, and a s a egic pe spec i e o leade s/commissione s, ensu ing app op ia e communica ion wi h each s akeholde g oup. Ou ecommenda ions o pa ien ec ui men emphasise he impo ance o concise communica ion ma e ials, and in o ma ion sessions aimed a eaching a di e se audience. The use o social media pla o ms os e s a sense o communi y, while he ac i e in ol emen o he Pa ien Ad iso y Boa d pe sonalizes ou each e o s. Incen i es, including gi ca ds and ecogni ion in publica ions, could be used o hank pa icipan s o hei in aluable con ibu ions. In engaging heal hca e p o essionals, we ecommend ensu ing ha da a collec ion p ocesses can be well in eg a ed in o exis ing wo k lows o minimize bu den on busy HCPs. P o essional de elopmen oppo uni ies, and he impo ance o clinical champions o ad oca e o he ini ia i e and encou age hei colleagues o ge in ol ed could enhance engagemen . Ou ecommenda ions o secu ing suppo om s a egic leade s and commissione s emphasise he p ojec 's alignmen wi h o ganisa ional goals and inancial iabili y. Regula upda es and acili a ed s akeholde mee ings a e key componen s in gaining buy-in and sus ained commi men om hese key s akeholde s. Toge he , hese ini ia i es can encou age ac i e pa icipa ion and suppo , and ul ima ely con ibu e o mee ing STRONG AYA’s aim o imp o e pa ien -cen ed heal h esea ch and ou comes o young people wi h cance . STRONG AYA – No. 101057482 – D1.3 4 1 Table o Con en s PUBLISHABLE SUMMARY ............................................................................................................................................ 3 1 TABLE OF CONTENTS .......................................................................................................................................... 4 2 DEFINITIONS....................................................................................................................................................... 5 3 ABBREVIATIONS ................................................................................................................................................. 6 4 INTRODUCTION .................................................................................................................................................. 7 PROJECT BACKGROUND ........................................................................................................................................... 7 DELIVERABLE INTRODUCTION .................................................................................................................................... 8 5 EDUCATIONAL LEAFLETS .................................................................................................................................... 9 6 RECOMMENDATIONS FOR PATIENT RECRUITMENT, HCP AND STRATEGIC LEADERS/ COMMISSIONERS’ ENGAGEMENT ...........................................................................................................................................................10 7 CONCLUSION .....................................................................................................................................................12 8 APPENDICES ......................................................................................................................................................13 STRONG AYA – No. 101057482 – D1.3 5 2 De ini ions STRONG AYA conso ium membe s a e e e ed o as ollowing wi hin his ex : 1. NKI-AVL – S ich ing he Nede lands Kanke Ins i uu – An oni an Leeuwenhoek Ziekenhuis (NL) 2. YCE – You h Cance Eu ope (RO) 3. INT – Fondazione IRCCS Ins i u o Nazionale dei Tumo i (IT) 4. FFUND – FFUND BV (NL) 5. CLB – Cen e de Lu e Con e le Cance Leon Be a d (FR) 6. ECO – Eu opean Cance O ganisa ion (BE) 7. UNIMAAS – Uni e si ei Maas ich (NL) 8. IKNL – S ich ing In eg aal Kanke cen um Nede land (NL) 9. EORTC – Eu opean O ganisa ion o Resea ch and T ea men o Cance AISBL (BE) 10. IGR – Ins i u Gus a e Roussy (FR) 11. MSCNRIO – Na odowy Ins y u Onkologii im. Ma ii Sklodowskiej-Cu ie – Pans wowy Ins y u Badawczy (Ma ie Sklodowska-Cu ie Na ional Resea ch Ins i u e o Oncology) (PL) 12. UOM – Uni e si y o Manches e (UK) 13. UOL – Uni e si y o Leeds (UK) 14. LTHT – Leeds Teaching Hospi als Na ional Heal h Se ice T us (UL) 15. SOUTHAMPTON – Uni e si y o Sou hamp on (UK) • G an Ag eemen (including i s annexes and amendmen s): he ag eemen signed be ween he bene icia ies o he HORIZON Resea ch and Inno a ions Ac ions (he ea e e e ed o as Ho izon) and he Eu opean Heal h and Digi al Execu i e Agency (he ea e e e ed o as HADEA) o he unde aking o he STRONG AYA p ojec (G an Ag eemen no. 101057482). • Bene icia y: Signa o ies o he G an Ag eemen • Associa ed Pa ne : En i ies which pa icipa e in he ac ion bu wi hou he igh o cha ge cos s o claim con ibu ions. • P ojec : he sum o all ac i i ies ca ied ou in he amewo k o he G an Ag eemen . • Conso ium: he STRONG AYA conso ium, including all he a o emen ioned pa ne s. • Conso ium Ag eemen : The ag eemen made be ween STRONG AYA membe s o he implemen a ion and execu ion o he ac ion ou lined in he G an Ag eemen . The ag eemen shall no a ec he pa ies’ obliga ions o HADEA on behal o he Eu opean Union, and/o o one ano he a ising om he G an Ag eemen . STRONG AYA – No. 101057482 – D1.3 6 3 Abb e ia ions Ac onym/Abb e ia ion Meaning HCP Heal hca e P o essional PRO Pa ien Repo ed Ou come PROM Pa ien Repo ed Ou come Measu e COS Co e Ou come Se WP Wo k Package WPL Wo k Package Lead(s) WP1 Wo k Package 1 (De elopmen Co e Ou come Se AYA wi h cance & da a collec ion) WP2 Wo k Package 2 (Go e nance, Da a Secu i y and E hics) WP3 Wo k Package 3 (In as uc u e and In e ope abili y) WP4 Wo k Package 4 (Ope a ion o STRONG AYA ecosys ems, s akeholde and pa ien in ol emen , dissemina ion, exploi a ion, communica ion) WP5 Wo k Package 5 (Scien i ic coo dina ion and p ojec managemen ) KPI Key Pe o mance Indica o OA Open Access PAB Pa ien Ad iso y Boa d EC Eu opean Commission HADEA Eu opean Heal h and Digi al Execu i e Agency SC S ee ing Commi ee MT Managemen Team STRONG AYA – No. 101057482 – D1.3 7 4 In oduc ion P ojec backg ound STRONG AYA is an EU- unded p ojec ha s a ed in Oc obe 2022 and will un o 5 yea s, un il 2027. The p ojec aims o c ea e a new, in e disciplina y, mul i-s akeholde Eu opean ne wo k a ound an inno a i e da a ecosys em o imp o e heal h ca e se ices, esea ch, ou comes and policies o AYAs wi h cance , which a e de ined o he p ojec as indi iduals aged 15-39 yea s a cance diagnosis. Cance a adolescen and young adul (AYA) age is a e; hei annual cance incidence is 42.2/100.000, wi h 156.431 cases in Eu ope and 1.231.007 cases wo ldwide epo ed in 2018 ( oge he 6.8% o all cance s)3. Popula ion-based da a om 27 Eu opean coun ies suppo s ha AYAs ha e lowe su i al han child en bu highe han adul s a ec ed by cance . Ad ances in cance ea men ha e led o inc eased su i al a es o AYAs wi h cance , imp o ing by 82% o all cance s be ween 1990 and 20074. Howe e , his a i y does no e lec he signi ican pe sonal and socie al cos s o cance in his popula ion, as e lec ed in he po en ial yea s o li e los o sa ed, he dec eased p oduc i i y and quali y o li e due o he impac o he disease du ing o ma i e yea s, and he long- e m complica ions o disabili ies1. AYAs wi h cance o m a unique g oup; hey ace age-speci ic issues (e.g., in e ili y, unemploymen , inancial p oblems) and dec eased quali y o li e due o cance and i s ea men . Unlike dedica ed heal hca e and ials o paedia ic cance pa ien s, AYA-speci ic heal hca e se ices a e sca ce and a y ac oss Eu ope. AYAs who a e a he co e o socie y and economy need access o age-app op ia e and high-quali y heal hca e. AYA ace some dis inc challenges gi en ha hey do no belong o nei he paedia ic no adul oncology g oups. Cha ac e is ic ea u es o his popula ion g oup include unique spec um o cance ypes, di e en umou biology, unique complex psychological needs, dis inc la e sequelae, including impai ed e ili y, and pallia i e ca e. These ai s imply ha clinical managemen , ea men , diagnosis, psychological suppo will need o be designed and de eloped o AYA’s speci ic needs. Fo example, AYAs diagnosed wi h b eas and p os a e ca cinomas ha e wo se su i al han olde pa ien s because o he biological di e ences be ween hem, highligh ing he need o a ge sc eening me hodologies, ea men and policies o hei needs6. AYAs wi h cance also ace signi ican psychological challenges, including subs ance abuse, men al heal h issues, suicidal idea ions and inc eased emo ional bu den om cance and cance - ela ed mo bidi y. Finally, ailo ing cance ca e o AYA’s needs is di icul and due o many di e en complex ac o s including he low a e o pa icipa ion by AYAs in clinical ials and cance esea ch7. Acco ding o a su ey conduc ed h ough he ne wo ks o he AYA Wo king G oup o he Eu opean Socie y o Medical Oncology (ESMO) and he Eu opean Socie y o Paedia ic Oncology (SIOP Eu ope), 67% o p ac i ione s do no ha e access o specialised cen es o AYA wi h cance , 67% had no access o a specialis cance se ice o la e e ec s managemen and 38% had no access o e ili y specialis s. Unde -p o ision and inequali y o AYA cance ca e is common ac oss Eu ope and especially in he Eas e n and Sou he n-Eas . Fu he mo e, he Wo king G oup also epo ed an absence o ou come measu es o moni o ing and e alua ing AYA cance ca e p og ams and con ol13. Among he ecommended u u e s eps, i has been iden i ied ha one o he mos impo an con ibu ions o AYA esea ch would be o pool da a (e.g. pa ien - epo ed ou comes, clinical and ea men da a) ac oss ins i u ions and coun ies and c ea e la ge coho s o esea che s o add ess he bu den o cance in AYAs14. The e is a lack o da a s anda disa ion, da a in e ope abili y and (p ospec i e) collec ion o ou comes o ele ance o AYAs wi h cance . The STRONG AYA p ojec aims o ackle he unde ep esen a ion o AYA’s expe iences and ou comes when na iga ing he heal hca e sys em and in clinical ca e by de eloping na ional in as uc u es o ou come da a managemen and clinical decision-making wi hin a pan-Eu opean ecosys em and es ablishing communica ion eedback o AYAs wi h cance and he heal hca e sys ems. This will be key o imp o ing STRONG AYA – No. 101057482 – D1.3 8 heal hca e se ices, esea ch, ou comes and policies o AYAs and o ul ima ely be e cance ca e o his pa ien g oup. To his aim, STRONG AYA b ings oge he an in e na ional mul i-disciplina y conso ium ac oss se en Eu opean coun ies, led by he Ne he lands Cance Ins i u e (NKI) and composed o academic esea ch o ganisa ions (Eu opean O ganisa ion o Resea ch and T ea men o Cance (EORTC), Uni e si y o Sou hamp on, Uni e si y o Leeds, Uni e si y o Manches e , Maas ich Uni e si y, Ne he lands Comp ehensi e Cance O ganisa ion (IKNL)), clinical pa ne s (I alian Na ional Tumou Ins i u e, Léon Bé a d Cen e, Gus a e Roussy Ins i u e, Ma ia Sklodowska-Cu ie Na ional Resea ch Ins i u e o Oncology, he Leeds Teaching Hospi als Na ional Heal h Se ice T us ), s akeholde and pa ien o ganisa ions (You h Cance Eu ope, Eu opean Cance O ganisa ion) and a consul ing company (FFUND). Building on p e ious ini ia i es, a STRONG-AYA da a ecosys em will be se up o alue-based ca e, esea ch and policy o AYA wi h cance by: 1. De eloping a Co e Ou come Se (COS) speci ically o AYAs wi h cance , ia a pa icipa i e consensus p ocess de ining mos impo an aspec s o hose di ec ly a ec ed by AYA cance , including pa ien s and heal hca e p o essionals (WP1). • Implemen ing he COS ac oss se e al na ional Eu opean heal hca e sys ems. Da a will be collec ed a local le el and will hen be included in a da a in eg a ion pla o m. An o e all ecosys em amewo k o da a analy ics and ou pu will be c ea ed suppo ing ede a ed analyses and he c ea ion o epo s ac oss clinical and pa ien - epo ed da a and making na ional eposi o ies o (pa ien - epo ed) heal h da a, a ailable o indi idual pa ien s, pa ien o ganisa ions, egula o y au ho i ies, as well as he pa ien s’ heal h ca e p o ide s o in o m clinical decision-making. The i e esul ing na ional ecosys ems will be connec ed o each o he in o he pan-Eu opean ecosys em using a ede a ed app oach also u ilizing he o e all ecosys em amewo k. 3. Dissemina ing he COS o a wide ange o local as well as pan-Eu opean s akeholde s, in pa icula by de eloping analy ical ools o p ocess and p esen pa ien ou come da a and es ablish eedback loops ha in o m pa ien s and clinicians. STRONG AYA will enable AYA ca e and esea ch o bene i om collec ion and pooling o pa ien -cen e ed da a and collabo a ion among all s akeholde s: pa ien s, heal hca e p o essionals, scien is s, and policymake s. Mo e widely, he p ojec will le e age he ne wo k o in e es ed o ganisa ions and ne wo ks es ablished unde STRONG AYA o long- e m s eng hened p omo ion o he necessa y implemen a ion o specialis AYA cance se ices ac oss Eu ope. This will ul ima ely b ing no el insigh s in o AYA cance ca e, esea ch and policy, con ibu ing o he long- e m imp o emen o ou comes o people wi h AYA cance . Deli e able in oduc ion WP1 (de eloping a Co e Ou come Se ): The o e all aim o WP1 is o de elop a Co e Ou come Se o AYAs wi h cance . We aim o assess which ou comes including pa ien - epo ed ou comes, clinical, and ea men da a, a e mos impo an o assess o AYAs wi h cance , om he poin o iew o AYAs wi h cance , heal hca e p o essionals and o he s akeholde s, o a i e a a consensus. This will be done h ough h ee phases; 1) a e iew o he li e a u e o iden i y ele an ou comes o AYAs wi h cance , 2) quali a i e in e iews wi h AYAs wi h cance /who ha e had a diagnosis o cance , pa en s/pa ne s/siblings and heal hca e p o essionals who p o ide ca e o AYAs o gene a e a comple e lis o ou comes o ele ance o AYAs wi h cance , and 3) conduc ing a Delphi s udy. The Delphi echnique is used o achie ing con e gence o opinion om all s akeholde s (wi h equal con ibu ions) on he impo ance o di e en ou comes in mul iple anonymised p io i isa ion ounds. A h ee- ound su ey will be sen o s akeholde s asking ques ions a ound ou comes ele an o AYAs cance ca e anking hem based on pe cei ed le el o impo ance. STRONG AYA – No. 101057482 – D1.3 9 Wi h he ini ial COS domains and me ics nea ing inalisa ion, WP1 is u ning i s a en ion o D1.3: da a collec ion and implemen a ion. To encou age pa icipa ion in his nex phase o he p ojec , clea and concise educa ional ma e ials (e.g. lea le s) a e essen ial. This epo ou lines he pu pose o he educa ional lea le s, why hey we e de eloped and how hey we e p oduced. We also epo on ecommenda ions o pa ien ec ui men and engagemen o clinicians and s a egic leade s/commissione s. 5 Educa ional lea le s In his epo , we desc ibe he de elopmen and pu pose o h ee se s o educa ional lea le s designed o imp o e ec ui men o he da a collec ion and implemen a ion phase o he STRONG AYA p ojec . Designed wi h an in o mal one, hese lea le s unde wen a collabo a i e design p ocess in ol ing pa ien s om he Pa ien Ad iso y Boa d (PAB), esea che s and heal hca e p o ide s (HCPs) wi hin he STRONG AYA conso ium. Ini ially c ea ed using Can a and enhanced wi h he help o a g aphic designe , hese lea le s a e designed o complemen exis ing Pa ien In o ma ion Fo m (PIF) documen s o be p o ided by indi idual pa icipa ing cen es. The lea le s explain STRONG AYA, wha da a will be collec ed, how he da a will be used, and he bene i s o pa icipan s who ake pa . De elopmen P ocess The h ee se s o educa ional lea le s, ailo ed o pa ien s, heal hca e p o essionals and s a egic leade s/commissione s, we e ini ially c ea ed on Can a (h ps://www.can a.com/). The lea le is spli in o eigh sho sec ions o ex ; Wha is STRONG AYA, Wha a e we doing?, Wha in o ma ion a e we collec ing?, Why a e we collec ing you in o ma ion?, How will we use you in o ma ion?, How you can ge in ol ed?, Da a P i acy and e hics and How will his bene i me? The w i ing s yle main ains a pa ien - iendly one o pa ien lea le s, a p o essional one o HCPs and a s a egic pe spec i e o leade s/commissione s, ensu ing i 's ele ance o all in ended audiences. A collabo a i e app oach was aken o he de elopmen o hese lea le s, seeking insigh s om pa ien s, HCPs and s a egic leade s/commissione s wi hin he STRONG AYA conso ium. Feedback om his ex ensi e e iew p ocess has been inco po a ed in o subsequen e isions. Con en o lea le s Pa ien lea le (see appendix 1) The pa ien lea le s explain he impo ance o con ibu ing hei da a o his p ojec . The e iew p ocess, in ol ing he Pa ien Ad iso y Boa d, ensu es ha he con en o he lea le esona es wi h he in ended audience. In addi ion, a dedica ed sec ion in he pa ien lea le only encou ages pa ien s no only o pa icipa e in da a collec ion, bu also o ac i ely co-design he digi al pla o m. The digi al pla o m se es as a ool o da a collec ion o pa ien epo ed ou comes. The e o e, pa ien s' in ol emen in shaping i s ea u es ensu es ha i mee s hei unique needs and p e e ences. HCP (see appendix 2) Lea le s o heal hca e p o ide s ocus on encou aging engagemen o young people aking pa in his esea ch ini ia i e. Wha is STRONG AYA? STRONG AYA is an in e na ional p ojec ha aims o imp o e heal hca e se ices, esea ch and ou comes o adolescen s and young Adul s (AYA) wi h cance , de ined as indi iduals aged 15-39 yea s a cance diagnosis. Wha do we do? We' e been alking o young people wi h cance , hei amilies, doc o s, and esea che s wo ldwide o ind ou wha 's mos impo an in unde s anding and ea ing cance o his age g oup. They old us abou hings like wan ing o socialize, managing e ili y conce ns, dealing wi h 'chemo b ain,' and eeling hea d by hei doc o s. We' e pu all his in o in o a simple lis we call a Co e Ou come Se (COS). We’ e using he COS o help us wi h he nex s eps. We' e collec ing in o ma ion om young people ac oss heal hca e sys ems in i e Eu opean coun ies. Check ou he 'wha in o ma ion a e we collec ing' and ‘how you can ge in ol ed’ sec ions o unde s and wha in o ma ion we’ e collec ing and how you can help. Ou goal is o sha e wha we' e lea ned, encou age collabo a ion be ween di e en g oups, and use sma ools o make su e heal hca e p o essionals and esea che s ha e he bes in o ma ion o deciding on age-app op ia e ca e. By unde s anding he speci ic needs o young people wi h cance , we wan o make su e he ca e p o ided eally mee s wha hey uly need. Wha in o ma ion a e we collec ing? We a e ga he ing in o ma ion om AYAs, abou hei expe ience wi h cance a e diagnosis (e.g. symp oms), o e all heal h and wellbeing. Why a e we collec ing his in o ma ion? To imp o e cance ca e se ices and quali y o li e a e diagnosis and ea men o AYAs. Heal hca e p o essionals We’ e ga he ing in o ma ion om AYAs h ough a secu e digi al pla o m. This pla o m will help AYAs and heal hca e p o essionals like you sel sha e in o ma ion and insigh s in o he AYA’s heal h (e.g. symp oms) and o e all wellbeing om diagnosis and beyond. Pa ien ’s indi idual in o ma ion is combined wi h hose o o he pa ien ’s o c ea e collec i e in o ma ion so ha no one is iden i iable. This collec i e in o ma ion helps us unde s and ends, discuss imp o emen s and p o ide e idence o clinical, esea ch, and policy pu poses. Heal hca e p o essionals play a i al ole in ou wo k. You can encou age pa ien s o comple e he su ey e alua ing ou comes. This can be done as many imes as needed, bu a leas once a yea . The su ey co e s di e en aspec s such as symp oms, quali y o li e, sleep, die , and daily ac i i ies, o imp o e heal hca e unde s anding and suppo . Pa ien da a can be collec ed in a a ie y o ways: by email, by elephone o a an appoin men . STRONG AYA is sp ead ac oss i e di e en heal hca e sys ems so p ac ice may a y be ween hospi als. Fo mo e de ails, please see he pa ien in o ma ion p o ided. STRONG AYA aims o equips heal hca e p o essionals by p o iding essen ial da a o op imizing AYA cance ca e. This in ends o suppo sha ed decision-making, moni o heal hca e quali y, enhance esea ch da a sha ing, and deli e s eal-wo ld e idence. By sha ing insigh s wi h policy- make s, we collec i ely wo k o add ess and educe inequali ies in AYA cance ca e ac oss Eu ope. We ake p i acy se iously. In STRONG-AYA, we s ic ly adhe e o da a p o ec ion, p i acy and pa ien igh s, ollowing egula ions such as EU GDPR and na ional guidelines. The use o his pla o m has been checked and app o ed by he ele an heal h se ice and academic esea ch e hics commi ees in he pa icipa ing cen es. How will we use his in o ma ion? How you can ge in ol ed? Da a p i acy and e hics How will his bene i me? h ps://s ongaya.eu s ong_aya [email p o ec ed] s ong_aya_eu STRONG AYA is unded by he Eu opean Union (G an Ag eemen No. 101057482). The iews exp essed a e solely hose o he au ho (s) and do no necessa ily e lec he opinions o he Eu opean Union o he Heal h and Digi al Execu i e Agency (HADEA). The Eu opean Union and he g an ing au ho i y canno be held esponsible o hese iews. This p ojec is u he suppo ed by Inno a e UK unde g an s 10038931, 10039273, 10041045, and 10044189. Wha is STRONG AYA? STRONG AYA is an in e na ional p ojec ha aims o imp o e heal hca e se ices, esea ch and ou comes o adolescen s and young Adul s (AYAs) wi h cance , de ined as indi iduals aged 15-39 yea s a cance diagnosis. Wha do we do? Wha in o ma ion a e we collec ing? Why a e we collec ing his in o ma ion? To imp o e cance ca e se ices and quali y o li e a e diagnosis and ea men . Commissione s and policymake s We a e collec ing in o ma ion om AYAs (aged 15-39 yea s), abou hei cance expe iences a e diagnosis (e.g. symp oms), hei heal h, and o e all wellbeing. We' e been alking o young people wi h cance , hei amilies, doc o s, and esea che s wo ldwide o ind ou wha 's mos impo an in unde s anding and ea ing cance o his age g oup. They old us abou hings like wan ing o socialise, managing e ili y conce ns, dealing wi h 'chemo b ain,' and eeling hea d by hei doc o s. We' e pu all his in o in o a simple lis we call a Co e Ou come Se (COS). We’ e using he COS o help us wi h he nex s eps. We' e collec ing in o ma ion om young people ac oss heal hca e sys ems in i e Eu opean coun ies. Check ou he 'wha in o ma ion a e we collec ing' and ‘how you can ge in ol ed’ sec ions o unde s and wha in o ma ion we’ e collec ing and how you can help. Ou goal is o sha e wha we' e lea ned, encou age collabo a ion be ween di e en g oups, and use sma ools o make su e heal hca e p o essionals and esea che s ha e he bes in o ma ion o deciding on age- app op ia e ca e. By unde s anding he speci ic needs o young people wi h cance , we wan o make su e he ca e p o ided eally mee s wha hey uly need. We’ e collec ing in o ma ion om pa ien s h ough a secu e digi al pla o m. This pla o m will help AYAs and heal hca e p o essionals ha e he op ion o sha e in o ma ion and ge a be e unde s anding in o he AYA’s heal h (e.g. symp oms) and o e all wellbeing om diagnosis and beyond, should hey wish. Pa ien ’s indi idual in o ma ion is combined wi h hose o o he pa ien ’s o c ea e collec i e in o ma ion so ha no one is iden i iable. This collec i e in o ma ion helps us unde s and heal h ends, discuss imp o emen s and p o ide e idence o clinical, esea ch, and policy pu poses. Encou age heal hca e p o ide s o acili a e pa ien pa icipa ion in ou annual su ey, accessible online, on pape , o wi h assis ance om ou eam in pe son, o e he phone, o ia secu e ideo-cha . This su ey ocuses on a ious aspec s o heal h and wellbeing. STRONG AYA aims o p o ide c ucial insigh s in o pa ien expe iences and needs. This da a aids in in o med decision making o esou ce alloca ion, se ice imp o emen , and s a egic planning. The su ey da a will con ibu e o mo e e ec i e and ailo ed heal hca e se ices. This s a egic app oach ensu es a mo e sus ainable heal hca e sys em ha aligns wi h bo h pa ien needs and economic conside a ions. We ake p i acy se iously. In STRONG-AYA, we s ic ly adhe e o da a p o ec ion, p i acy and pa ien igh s, ollowing egula ions such as EU GDPR and na ional guidelines. The use o his pla o m has been checked and app o ed by he ele an heal h se ice and academic esea ch e hics commi ees in he pa icipa ing cen es. How will we use his in o ma ion? How you can ge in ol ed? Da a p i acy and e hics How will his bene i me? h ps://s ongaya.eu s ong_aya [email p o ec ed] s ong_aya_eu STRONG AYA is unded by he Eu opean Union (G an Ag eemen No. 101057482). The iews exp essed a e solely hose o he au ho (s) and do no necessa ily e lec he opinions o he Eu opean Union o he Heal h and Digi al Execu i e Agency (HADEA). The Eu opean Union and he g an ing au ho i y canno be held esponsible o hese iews. This p ojec is u he suppo ed by Inno a e UK unde g an s 10038931, 10039273, 10041045, and 10044189.