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 – D3.4
2
Deli e able Repo
WP3 – In as uc u e and in e ope abili y
Deli e able D3.4
De elopmen o co e elemen s o s akeholde -cen ic epo s
Due da e o deli e able: 30/09/2024
Ac ual submission da e: 31/10/2024
P ojec : STRONG-AYA
Lead Con ibu o Leona d Wee, UNIMAAS
Email [email p o ec ed]l
O he Con ibu o s Ba an Beusekom, IKNL
Joshi Hogenboom, UNIMAAS
Simone Hanebaum, NKI
Alizee Dia chenko, CLB
U ske Koci , YCE
Emails
b. [email protected]; joshi.hogenboom@maas o.nl;
[email protected]; Alizee.DIATCHE[email p o ec ed]nicance . ;
u ska.kosi [email protected]
Due da e
31 09 2024
Deli e y da e
31 10 2024
Deli e able ype
R
Dissemina ion le el SEN
Desc ip ion o Wo k Ve sion Da e
V1.0 31/10/2024
STRONG-AYA – No. 101057482 – D3.4
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Desc ip ion:
These co e elemen s will o m he basis o he s akeholde -cen ic epo s,
de eloped o e he cou se o he p ojec in a leas wo ounds o i e a i e
e ision.
Summa y
The STRONG AYA da a ecosys em and ede a ed lea ning in as uc u e is a digi al a e ac o sha ing
insigh s om da a. Technical and go e nance o he da a ecosys em and ede a ion echnology is
desc ibed elsewhe e in o he deli e ables. This deli e able epo s on he CORE ELEMENTS o how
he insigh s gained om ede a ed da a analysis will be sha ed amongs app o ed use s.
By epo s, we mean he digi al ou pu s o ou echnological in as uc u e, execu ed on demand by
he use , which p incipally consis s o g oup s a is ics and/o epidemiological s a is ical modelling.
The aw ou pu , o i sel , is no easily unde s andable and no cogni i ely easy o diges by a di e se
and highly he e ogeneous communi y o po en ial use s (a.k.a. “s akeholde s”), he e o e he
emphasis o he epo s needs o be on DATA ANALYTIC VISUALIZATIONS, GRAPHICAL SUMMARIES,
INTERACTIVE DASHBOARDS, and o he simila ly- ela ed ways o dissemina ing insigh de i ed om
backg ound p ocessing o ichly g anula da a.
By co e elemen s, we mean o iden i y he modules and componen s ha can be adap ably and
lexibly chained oge he in a digi al ashion (such as a websi e o a web-applica ion) so ha a gi en
a ge use may, o he bes deg ee ha we a e able, be gi en a use -cus omized way o
unde s anding he analysis esul s. I we in end o do his in a highly sus ainable manne wi h less
labou -in ensi e e o , we need o design use -cen ic (s akeholde -cen ic) isualiza ion concep s
a ound a se o modula co e elemen s.
This epo he e o e desc ibes he consul a i e p ocess o mul i-s akeholde co-c ea ion, o iden i y
a an ea ly s age o he p ojec , wha a e he mos basic co e elemen s o digi al epo ing, ha can
be la e assembled in o easily diges ible iews o da a analysis esul s ha a e i ed o he needs o
di e en po en ial use s. We hen p esen he ini ial concep plans and mood boa d, o gi e an
example o how ce ain elemen s can be b ough oge he . While i is no possible a his s age o
c ea e mood boa ds o ep esen e e y concei able ype o use , we will poin ou how he so wa e
ools behind he digi al concep s can be edi ed in he backg ound, so ha i would be possible o
c ea e “ iews” ( epo s) i ing o di e en g oups o use s (s akeholde s).
STRONG-AYA – No. 101057482 – D3.4
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1 Table o Con en s
SUMMARY .................................................................................................................................................................. 3
1 TABLE OF CONTENTS .......................................................................................................................................... 4
2 DEFINITIONS....................................................................................................................................................... 5
3 ABBREVIATIONS ................................................................................................................................................. 6
4 PROJECT INTRODUCTION ................................................................................................................................... 7
PROJECT BACKGROUND ........................................................................................................................................................ 7
5 DELIVERABLE INTRODUCTION ............................................................................................................................ 8
Disclaime ..................................................................................................................................................... 9
Complemen a y documen a ion ................................................................................................................... 9
6 CONSULTATION AND IDENTIFICATION OF PRELIMINARY USER ARCHETYPES ..................................................... 9
Summa y syn hesis o consul a ions ........................................................................................................... 13
7 CORE ELEMENTS ................................................................................................................................................14
8 ADDITIONAL ELEMENTS ....................................................................................................................................23
9 CONCLUSION OF DELIVERABLE REPORT ............................................................................................................25
APPENDIX A : EXAMPLES OF PUBLICLY OPENLY ACCESSIBLE DASHBOARDS ...............................................................26
APPENDIX B : EXAMPLE INTRA-INSTITUTIONAL DATA DASHBOARD ..........................................................................28
STRONG-AYA – No. 101057482 – D3.4
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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 – D3.4
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3 Abb e ia ions
Ac onym/Abb e ia ion
Meaning
HCP
Heal h Ca e P o ide
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
DMP
Da a
Managemen Plan
STRONG-AYA – No. 101057482 – D3.4
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4 P ojec In oduc ion
P ojec backg ound
To assis he eade wi h he backg ound o his p ojec , he ollowing ex s ha e been de i ed om s anda d
documen a ion pe aining o he en i e y o he STRONG AYA p ojec :
Cance a adolescen and young adul (AYA) age (15-39 a p ima y diagnosis) is a e. 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 he economy
need access o age-app op ia e and high-quali y heal hca e.
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 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. The
p ojec b ings oge he an in e na ional mul i-disciplina y conso ium (academic/ esea ch, clinical,
s akeholde and pa ien o ganisa ions) ac oss se en Eu opean coun ies.
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 AYA2. The e is a p esen a lack o da a
s anda diza 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 ac oss cance ca e ins i u ions ac oss Eu ope.
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 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.
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.
2. 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
1 S oneham SJ. AYA su i o ship: The nex challenge. Cance 2020; 126: 2116-2119.
2 Smi h AW, Seibel NL, Lewis DR e al. Nex s eps o adolescen and young adul oncology wo kshop: An upda e on p og ess and ecommenda ions o he
u u e. Cance 2016; 122: 988-999.
STRONG-AYA – No. 101057482 – D3.4
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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.
Implemen ing hese p ojec objec i es a e i e wo k packages wi hin he STRONG-AYA p ojec :
• WP1: De elopmen Co e Ou come Se AYA wi h cance and Da a Collec ion (Lead: SOUTHAMPTON)
• WP2: Go e nance, Da a Secu i y and E hics (Lead: EORTC)
• WP3: In as uc u e and In e ope abili y (Lead: UNIMAAS)
• WP4: Ope a ion o STRONG-AYA ecosys ems, S akeholde and Pa ien in ol emen , Dissemina ion,
Exploi a ion, Communica ion (Lead: E.C.O.)
• WP5: Scien i ic Coo dina ion and P ojec Managemen (Lead: NKI)
STRONG-AYA will he e o e 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 .
5 Deli e able in oduc ion
The STRONG-AYA conso ium belie es ha inno a i e and pa adigm-b eaking ways o accessing p i acy-
sensi i e mul i-ins i u ional da a, and acili a ing sha ing o knowledge ac oss ins i u ional da a siloes is
u gen ly needed o imp o e heal hca e o his unique g oup o people. The key pilla s o STRONG AYA a e :
(1) consensus (Delphi) de elopmen o a Co e Ou comes Se i.e. COS; (2) ede a ed lea ning in as uc u e
o collec ing, managing and en iching AYA da a among pa icipa ing coun ies; (3) dissemina ing da a-d i en
insigh s and da a analysis ools a pan-Eu opean le el o help imp o e pa e ns o ca e o AYAs e e ywhe e.
A ede a ed da a ecosys em pa adigm o da a managemen and da a analysis was chosen as a me hod o
add ess agmen a ion o da a, o add ess adop ion ba ie s associa ed wi h cen alized pa ien da a
eposi o ies, and o be mo e easily able o suppo scale-up wi h a la ge numbe o expec ed u u e
pa ne s/ins i u ions. The echnological co ne s one o he p ojec is ede a ed analy ics, i.e. pe o ming
s a is ical da a analyses and gene a ing summa y isualiza ions o da a-analy ic esul s bu wi hou
ansmi ing any indi idual pa ien -le el da a ou side o he da a-owning ins i u ion. STRONG-AYA
addi ionally enables ede a ed lea ning such ha p ognos ic and p edic i e (epidemiological) models can be
de eloped wi hou he need o ans e indi idual pa ien -le el be ween pa icipa ing ins i u ions.
This deli e able epo speci ically ocusses on he dissemina ion o he esul s o he da a analysis and
ede a ed lea ning. Howe e , he aw esul s o da a p ocessing o s a is ics and/o s a is ical modelling is
no easily unde s andable o a wide and he e ogenous communi y o po en ial use s. The e o e he emphasis
o he epo s om da a p ocessing needs o be on DATA ANALYTIC VISUALIZATIONS, GRAPHICAL
SUMMARIES, INTERACTIVE DASHBOARDS, and o he simila ly- ela ed ways o dissemina ing insigh de i ed
om he digi al compu e -based p ocessing o he unde lying ichly g anula AYA pe sonal da a.
STRONG-AYA – No. 101057482 – D3.4
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Fu he mo e, we know ha a one-size i s all app oach canno be an app op ia e solu ion, since we an icipa e
ha each ype o use /s akeholde migh ha e di e en needs and di e en le els o engaging wi h he
esul s o he da a analysis. The e o e, he digi al ools o epo ing needs o be concep ualized as modula
componen s, ha can la e be assembled easily in so wa e, so ha we can la e on cus omized speci ic ools
o speci ic communi ies o use s.
Disclaime
This documen is in ended as a li ing documen . As equi emen s de elop and mo e unc ionali y becomes
easible, he e shall be changes and upda es. The e e ence copies o each e sion will be kep on he NKI
STRONG-AYA conso ium Sha epoin ®.
Complemen a y documen a ion
This documen is o he use o Pa ne s o STRONG-AYA P ojec ( e e ence numbe 101057482) as de ined
in he Gene al Ag eemen (execu ed 18 May 2022) and he Conso ium Ag eemen (execu ed on da e 19
Decembe 2022).
This documen may be used complemen a ily wi h he STRONG-AYA business a chi ec u e (D2.1), The Code
o Conduc (D2.2) and he o e a ching ope a ional plan(s) o he STRONG AYA ecosys ems bo h na ional and
pan-Eu opean (D4.4, D4.6, D4.7), hence his epo mainly add esses he echnological componen s. This
documen may also o be used complemen a ily wi h he STRONG-AYA Da a Managemen Plan (D3.1) and
he STRONG-AYA echnical a chi ec u al bluep in (D3.3).
6 Consul a ion and iden i ica ion o p elimina y use a che ypes
The consul a ions o he co e elemen s o epo s we e p incipally c ea ed h ough (i) in ensi e in e iews
wi h he STRONG AYA pa ne s, ep esen ing a wide p o essional c oss-sec ion o AYA- ea ing physicians,
clinical esea che s, cance su i o s and echnology expe s. Secondly, a public s akeholde o um was
o ganized and sponso ed by conso ium pa ne Eu opean Cance O ganiza ion in Sep embe 2023, which
was used as an ad iso y con ac poin wi h a wide g oup o po en ial use s.
In hese consul a ions, i was clea ha we canno ep esen e e y unique poin o iew, because ou
communi y o u u e use s will be as and highly he e ogenous. The he e ogenei y is in le el o educa ion,
le el o amilia i y wi h using digi al ools, le el o pe sonal engagemen wi h he opic o his conso ium,
and mos undamen ally he e ogenei y in he objec i e/pu pose o seeking in o ma ion om da a analysis
in he i s place.
We ied o syn hesise he in elligence gleaned om he abo e ocus se ings, o come up wi h ini ially 5 use
a che ypes ha could help pa ame e ize he digi al design wo k. We know hese ic ional a che ypes d awn
om he o emen ioned in e iews and communi y consul a ion canno e e be exhaus i e, bu we wan ed
o used hese as “bounda y ma ke s” o help us pa ame e ize he design space inside which we need o plan
ou ini ial wo k. To hese 5, we ha e added one implici “use ” (ma ked * below) which is based inside he
STRONG AYA conso ium leade ship and needs ools o ope a ionaliza ion o da a analysis om wi hin he
conso ium. The p esen a che ypes a e p esen ed as ollows in no pa icula o de :
1) Recen ly-diagnosed AYA wi h cance
2) Long- e m cance su i o
STRONG-AYA – No. 101057482 – D3.4
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Fig.2 Fo egis e ed use s whe e we wish o p o ec speci ic unc ionali y such as il e ing/sea ching, in e ac i e da a explo a ion and
unning s a is ic modelling, we equi e an elemen o sa e o de ine speci ic use p o iles wi h hei associa ed pe missions.

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Fig. 3 Illus a ion o he concep o speci ic opics o in e es o a use , which a e he eby ese ed as opical modules. The modules
will need o be con igu ed on use cases ha a e cu en ly in discussion and/o eme ging in he u u e o he p ojec .
5. Wi hin a gi en opic o in e es , o example ea men op ions o quali y o li e ou comes, we we e ad ised
o adop a “ lashca d” in og aphic s yle o p esen a ion. In keeping wi h well-es ablished li e a u e on
communica ion o da a and s a is ics o a non-specialized audience, i was ag eed ha pe cen ages and a ios
was o e y limi ed p ac ical help owa ds unde s anding.
Following bes p ac ices in he medical communica ion domain, and guidelines ela ing o he de elopmen
o “decision aids” and simila communica ion/educa ion ools, we selec ed o adop a s anda d amewo k
o being able o epo an a bi a y s a is ical summa y as “X ou o 100 people …” whe e X is whiche e
s a is ic o in e es o a gi en opic.
Fo a pu ely hypo he ical ins ance, based on wha e e s a is ical compu a ion ha is happening unde he
hood, we would hen be able o epo some aw nume ical esul s o he backg ound compu a ion (e.g. 30%)
as some hing like “30 ou o 100 people aged be ween 15-39 yea s epo ed FATIGUE om 2 yea s up o 15
yea s a e cance ea men ” (see Fig. 4). As can be seen in he a o emen ioned igu e, i was ad ised o
p esen s a is ical esul s in bo h isual g aphical o ma using gene ic “human” igu es in a la ge easily isible
o ma (so as no o disad an age pe sons wi h some sigh impai men s) as well as in la ge sized ex on
below he in og aphic (which can – in u u e i e a ions – also be connec ed o a digi al ex - o-speech ool o
ead ou he in o ma ion o he use ).
Addi ionally, we we e asked o y ou a conno a i ely “neu al” colou heme wi h so e shades o
sa u a ion, a oiding ce ain colou s ha migh be subconsciously misin e p e ed (e.g. ed = “bad”, g een =
“good”). This was uly a subjec i e opinion, because colou schema ha appeal o one pe son migh no
appeal o ano he . A his poin o he p ocess, we looked a he colou s con ained in he o icial STRONG
AYA logo, and ied using some o hose colou s and shades appea ing in he logo. On he o he hand,
supe icial ea u es such as he colou o on o on size o a co e elemen (since his is a digi al
dissemina ion pla o m) would be e y easy o e-con igu e a a la e poin o ime.
STRONG-AYA – No. 101057482 – D3.4
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Fig. 4 The in og aphic elemen o da a isualiza ion o p opo ions/ a io/ equencies, using la ge easily isible igu es as well as he
same in o ma ion in la ge on ex .
Fig. 5 Accompanying in o ma ion elemen desc ibing how eliable o how quali ied he s a is ical analysis migh be. This may also
include in o ma ion abou he da a sou ces, o i he analysis has included some amoun o de-iden i ied eal subjec s and/o
syn he ically-gene a ed da a ( o example, using a i icial in elligence ools).
6. A u he necessi y is a supplemen a y in o ma ion elemen o be a ached o he in og aphic elemen ,
ela ing o how quali ied, o how eliable, o how ep esen a i e he da a migh be ha was used o gene a e
he a o emen ioned in og aphic. Feedback om HCPs, e hicis s and pa ien s also sugges ed ha we should
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be anspa en ly open abou wha kind o da a sou ces, o (as we may an icipa e in u u e) whe he
some o m o machine lea ning was used o gene a e o p ocess he da a.
7. The ollowing elemen he e is discussed bu does no appea ob iously o he use . This is in keeping wi h
he eques ha he echnology needs o wo k unde he co e s, bu he use should no be expec ed o ha e
specialized p og amming skills o echnical skills. To his end, we ha e implemen ed he ollowing
unc ionali y amewo k unde nea h he isible laye s o he a o emen ioned elemen s.
Fi s , when equi ed, he use case selec ed by he use igge s a ede a ed analysis h ough he Van age6
so wa e implemen a ion ha powe s he echnology a chi ec u e. This means ha a p e-de ined and p e-
app o ed que y is dis ibu ed o all con ibu ing da a ins i u ions. The ede a ed analysis uns ac oss hese
pa icipa ing da a pools, and only he combined s a is ical esul is ansmi ed back in o de o be displayed
in he in og aphic. In his manne , he s a is ics could po en ially be upda ed li e and in nea eal- ime,
howe e depending on he complexi y o size o he esul o be compu ed, will ha e an implici la ency o a
ew seconds in o de o come up in he display.
Secondly, as de ined in g ea de ail in he echnical a chi ec u al bluep in and DPIA, unknown and unce i ied
s a is ical algo i hms will be blocked by he in as uc u e. Allowed s a is ical analyses a e ce i ied and
alida ed in a p i a e s a is ical algo i hm eposi o y owned by he conso ium, and only hese analyses can
be igge ed by he isualiza ion on -ends.
Fig. 6 Re e ences elemen , poin ing o ex e nal esou ces o suppo , counselling, ad ice and clinical ca e i he use eels he need
o look his kind o in o ma ion up.
8. In keeping wi h he concep ual a che ypes o po en ial use s in he p e ious sec ion, he exp essed p io i y
was o in o ma ion o be co ec , b ie and accessible, bu should no come ac oss as pushy o in usi e o
ins uc ional. Howe e , i was also el ha – in case he need o addi ional suppo migh be igge ed by
eading abou he p esen ed in o ma ion in he in og aphic, he e had o be an elemen ha allows us o
di ec he use – i hey so wish – o seek ou counselling, ad ice o o he o m o ca e (see Fig. 6).
This e-di ec ion o addi ional ex e nal esou ces will be suppo ed in he on end o ou da a isualiza ions,
bu only high quali y in o ma ion chosen speci ically by HCPs and AYA expe s will be inco po a ed he e as
addi ional sou ces o suppo (o linked in o ma ion).
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9. Laye ed-in o ma ion p esen a ion; ac oss di e en use ypes, he guidance we ecei ed was ha a p e-
de e mined wo k low o a o ced sequence o s eps migh eel oo con olling o he use . Wha we hea d
was, he da a isualiza ions had o be diges ible and accessible up- on a he op (gene al le el) o he
s a is ics, bu ha some imes oo much o in o ma ion a one ime was coun e p oduc i e. This is pa icula ly
he case whe e he s a is ics can be con on ing o upse ing o igge ing. We ook his o mean ha we
needed o p o ide ooling elemen (s) in he isualiza ion on ends ha would allow he use – s ic ly
olun a ily – o d ill down deepe in o he da ase .
Fig. 7 Illus a ion o he il e ing and da a explo a o y elemen s ha would allow use s – subjec o hei le els o pe missions and
access p i ileges, o d ill down o a ce ain deg ee wi hin he in og aphic lashca d.
Fo he gene al public-access use , we would keep his unc ionali y ela i ely basic and udimen a y and
cons ained o only high-le el summa ies. The e could (subjec o consensus wi hin he p ojec conso ium)
be he abili y o d ill in o b oad ca ego ies o cance ypes (see Fig. 7), o o compa e subg oups (by age
deciles, o ins ance, o by majo g oupings o coun ies, o ano he example) (see Fig. 8).
Fo he speci ic use s wi h highe le els o pe mission and explo a o y p i ileges, we would s ill allow il e ing
and sea ching acco ding o po en ially mo e complex se s o pa ame e -based c i e ia, bu s ill subjec o he
o e a ching p o ec ion mechanisms wi hin he ede a ion a chi ec u e o p e en il e ing s a is ics down o
a subse o oo ew indi iduals (in which case his would no be su icien ly obscu ing o indi idual pe sonal
da a alues).
In keeping wi h I em 8 men ioned abo e, he echnological design o he ede a ed lea ning a chi ec u e is
ha use inpu s may be able o igge new ede a ed analysis uns (which will happen unde he co e s),
ha will combine he pa ial s a is ics om mul iple dispe sed da ase s and b ing hese oge he as he global
agg ega ed s a is ic o be shown in he in og aphic. We an icipa e ha his will add some ime la ency o
some seconds be o e he in e ac i e dashboa d display can upda e, bu we also eel ha he laye ed-
in o ma ion p esen a ion and he d ill-down unc ionali y is wo h he e o o he sake o he use s.
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Fig 8. Illus a ion o he subg oup compa ison unc ionali y ha would allow use s – subjec o hei le els o pe missions and access
p i ileges, o compa e subg oups o a ce ain le el o da a g anula i y wi hin he in og aphic lashca d. No illus a ed ye he e, bu
he in en ion is hen o show wo in og aphic elemen s side by side, so ha a isual and ex ual compa ison o he wo g oups can
be accessed on one lashca d s yle o p esen a ion.
Fig 9. Concep ualiza ion o a sepa a e esea ch-leade o ien ed iew o he STRONG AYA conso ium da a ac oss mul iple
pa icipa ing ins i u ions. The in en ion o he specially p i ileged iew – which will no be widely accessible o ex e nal s akeholde s
– will allow leade s in he conso ium o ge an o e iew o da a quali y and explo e subse s o da a wi hou be aying an indi idual’s
ac ual da a alues.

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10. Da a manage s and esea ch leade s po al iew o conso ium da a; a he highes and mos p i ileged
le el o unc ionali y o explo ing he da ase s collec ed ac oss he whole conso ium, we ha e p epa ed a
concep o a da a managemen dashboa d ha would p o ide g anula s a is ics o he conso ium
collec ion, bu wi hou exposing indi idual subjec s’ da a alues (see Fig. 9). This was inspi ed by wo k done
in e nally by conso ium pa ne CLB (see Appendix B), howe e we had o adap i so ha indi idual subjec s’
da a alues would emain obscu ed by he ede a ion analy ic in as uc u e. Fo his sophis ica ed use o
he pla o m, i is no longe possible o e ain he in og aphic isualiza ion s yle, he e o e we e e o mo e
esea che -o ien ed iew based on adi ional da a isualiza ion dashboa ds (such as he examples shown in
Appendix A).
11. Las ly, o specially designa ed esea che s wi hin he conso ium wi h speci ic pe mission o un
s a is ical modelling in a ede a ed ashion ac oss mul i-ins i u ional da ase s, we ha e apidly ad anced on
building a esea che -cen ed “que y-expe imen - epo ” po al unc ionali y di ec ly in o he Van age6
in as uc u e (see Fig. 10) in close coope a ion wi h conso ium echnology pa ne IKNL. In his concep ion,
he e will be a guided wo k low o assis he esea che in e ms o (a) de ining he pa ame e s (b) selec ion
o a sui able s a is ical amewo k (such as gene alized eg ession o Cox p opo ional haza ds, in he
example shown in he igu e) and (c) e ie ing he s a is ical modelling esul (i.e. model coe icien s).
Subjec o u he e inemen o he use cases in consul a ion wi h he esea ch membe s o STRONG AYA,
we in end o also suppo g aphical p esen a ion o he esul s in he esea che po al (in he example in Fig.
10, i may be a con ingency able o a Kaplan-Meie cu e).
Fig 10. P elimina y p o o ype o he po al o ede a ed s a is ical modelling o be made a ailable o STRONG AYA membe s wi h
sui able access pe missions and p o iles. A guided wo k low is en isaged, and we ha e illus a ed he e an in eg a ion wi h ce i ied
and alida ed s a is ical packages (Cox, logis ic eg ession, e c.) ha is a ailable o he esea che .
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8 Addi ional elemen s
The ollowing unc ional elemen s we e included o comple eness, as hey p o ide supplemen a y
unc ionali ies eques ed by ou ocus g oups which enhance he usabili y o he isualiza ion po als, bu
do no a ec he co e unc ionali y o he ede a ed STRONG AYA da a ecosys em.
Fig. 11 below illus a es, o he less digi ally li e a e use , i would be help ul o ha e some accessibili y-
enhancing guidance abou how o p oceed wi h using he a ailable unc ions.
Fig. 11 – ins uc ions o guiding he lesse digi ally-li e a e use , abou how o go abou making use o he da a isualiza ion.
Simila ly, o he less medically li e a e use , Fig. 12 illus a es he accessibili y o a glossa y o e ms in
language ha is mo e accessible o a a ge g oup o AYAs wi h cance . This is ac ually sou ced om
conso ium pa ne YCE, ha has in es ed g ea ly in o making medical e ms unde s andable and
imp o ing pa ien -doc o communica ions abou hei diagnosis.
Las ly, in esponse o bo h HCP po en ial use s and AYA po en ial use s, i was el ha a unc ionali y o
expo a pic u e o a ce ain in og aphic lashca d would aid in u u e ecall o a con e sa ion o
consul a ion, plus had he ex a bene i o being able o show he same in o ma ion o iends, amily and
pa ne s. The HCP also exp essed a desi e o be able o expo he s a is ics con ained in he in og aphic, so
ha hey could e-plo i a a la e ime in a di e en o m (e.g. piecha s, ba plo s, e c.) o dissemina ion
and communica ion o hei p o essional colleagues. This is illus a ed below in Fig. 13.
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Fig. 12 – a ailabili y o a simple o unde s and glossa y o e ms, o aid in unde s anding o use s in he AYA a ge age g oups, ha
a e expec ed o ha e widely a ying le els o age, educa ion and heal h li e acy.
Fig. 13 – addi ion o a u he elemen o swi ch he iew, ei he as a pic u e ca d o wi h ac ual nume ical esul s which can be e-
plo ed la e on.
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9 Conclusion o deli e able epo
This deli e able epo cap u es he co e and supplemen a y elemen s o how esul s o a s a is ical da a
analysis would be p esen ed o a wide and highly he e ogeneous se o po en ial use s. Fo he as majo i y,
he simple and non- h ea ening lashca d-s yle o in og aphic p esen a ion would be p e e able. Howe e ,
ou consul a ions wi h he ocus g oups also cap u e he needs o mo e sophis ica ed use s who would like
o di e deepe in o he analysis, wi h he possibili y (wi hin sa e limi s based on use case) o il e in o speci ic
cance ypes o age deciles, o example. Las ly, he mos highly sophis ica ed and complex use cases a e like
o come om esea ch leade s wi h speci ic and unique po al iews o da a quali y managemen , s a is ical
modelling and g anula da a explo a ion.
Gi en he as di e si y o use cases expec ed, we an icipa e ha he e will be no single one-size- i s-all
app oach. The e o e, his deli e able epo de ines he elemen s ha can be b ough oge he – o use s
wi h di e en needs, le els o p i ileged use o da a and le els o complexi y equi ed.
I needs o be ecognized by he eade o he epo ha he elemen s desc ibed he e needs o be modula ,
agile and adap able – as he p ojec ma u es and use cases e ol es oge he wi h he conso ium. Howe e
we belie e he elemen s we ha e exp essed he e will emain gene ally uni e sal and highly e-usable o
o he wo k.
Las ly, being implemen ed as a ully digi al pla o m, we an icipa e ha by ge ing he basic a chi ec u e and
co e unc ionali ies co ec , we can easily adap he mo e supe icial aspec s o he a o emen ioned elemen s
easily wi hin so wa e / web g aphic design ools.