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
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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
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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
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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
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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
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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
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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
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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
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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.