STRONG-AYA – No. 101057482 – D2.6
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 – D2.6
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Deli e able Repo
WP2 – Go e nance, da a secu i y and e hics
Deli e able D2.6
Fi s epo on s akeholde engagemen ocused on pa ien -cen e ed and pa ien -in o med e hical
guidance
Due da e o deli e able: 30/09/2024
Ac ual submission da e: 24/10/2024
P ojec : STRONG-AYA
Lead Con ibu o Flo a Lysen (UNIMAAS)
Email .lysen@maas ich uni e si y.nl
O he Con ibu o s Da ian Meacham (UNIMAAS); U ska Kosi (YCE); No be Couespel (E.C.O.);
Anna Kiss (E.C.O.); Dan S a k (UOL)
Emails
d.meacham@maas ic uni e si y.nl; u ska.kosi 2[email p o ec ed]om;
no be .couespel@eu opeancance .o g; anna.kis[email p o ec ed];
d.p.s a [email protected]
Due da e
30 09 2024
Deli e y da e
24 10 2024
Deli e able ype
R
Dissemina ion le el PU
Desc ip ion o Wo k Ve sion Da e
STRONG-AYA – No. 101057482 – D2.6
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V1.0 30 09 2024
Desc ip ion:
Fi s epo on s akeholde engagemen ocused on pa ien -cen e ed and pa ien -
in o med e hical guidance
Publishable summa y (max ½ page)
This epo p o ides a a ge ed li e a u e e iew o pa ien in ol emen p ac ices and pa ien in ol emen
e alua ion p ac ices ocused on he ield o AYA cance esea ch. In ecen yea s, e o s o in ol e pa ien s
in AYA esea ch ha e been in oduced wi hin he AYA popula ion, hough he numbe o ini ia i es is s ill
ela i ely small. Despi e he widesp ead calls o in ol emen p ac ices, implemen a ion, moni o ing and
e alua ion p ac ices o AYA pa icipa ion a e lacking in many Eu opean coun ies. The e a e cu en ly no
Eu opean s anda ds o in ol emen p ac ices wi h AYAs wi h li ed expe ience o cance : con ex -dependen
policies and bes p ac ices should be de eloped. This epo o e s a p elimina y mapping o he ype o
pa ien in ol emen p ac ices ha a e pa o he STRONG AYA p ojec , showing examples o ‘consen ’,
‘consul a ion’ and ‘coope a ion’ p ac ices. The epo also discusses he opic o e alua ion amewo ks o
pa ien in ol emen in ela ion o STRONG AYA’s in ol emen e o s. A wide a ie y o amewo ks and
guidelines exis in academic and p o essional li e a u e, wi h di e ing app oaches and ocus. Recen ly, wo
guidelines speci ically cen e ed on imp o ing pa ien in ol emen in AYA esea ch ha e been published. The
epo ends wi h ecommenda ions o imp o ing e alua ion amewo ks o pa ien in ol emen in he
con ex o esea ch p ojec s such as STRONG AYA.
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1 Table o Con en s
PUBLISHABLE SUMMARY (MAX ½ PAGE) .................................................................................................................... 3
1 TABLE OF CONTENTS .......................................................................................................................................... 4
2 DEFINITIONS....................................................................................................................................................... 5
3 ABBREVIATIONS ................................................................................................................................................. 6
4 INTRODUCTION .................................................................................................................................................. 7
PROJECT BACKGROUND ........................................................................................................................................... 7
DELIVERABLE INTRODUCTION .................................................................................................................................... 8
5 MAPPING PATIENT INVOLVEMENT PRACTICES IN STRONG AYA ......................................................................... 8
BACKGROUND TO THIS REPORT ................................................................................................................................. 8
5.1.1 STRONG AYA’s aims o pa ien in ol emen as pa o Ho izon Eu ope ...................................................... 9
5.1.2 STRONG AYA and Eu opean e hical p inciples o digi al heal h ................................................................ 10
5.1.3 Scope o his epo ..................................................................................................................................... 11
6 TARGETED LITERATURE REVIEW: PRACTICING AND EVALUATING PATIENT INVOLVEMENT IN AYA CANCER
RESEARCH ..................................................................................................................................................................11
PATIENT INVOLVEMENT IN AYA CANCER RESEARCH ..................................................................................................... 12
EXAMPLE OF INVOLVEMENT PRACTICES IN STRONG AYA ............................................................................................ 14
FRAMEWORKS FOR IMPROVING AND EVALUATING PATIENT INVOLVEMENT IN (AYA CANCER) RESEARCH ................................ 18
6.3.1 Expanding cu en amewo ks o e alua ing pa ien in ol emen o i wi h STRONG AYA .................... 20
7 CONCLUSION .....................................................................................................................................................23
8 BIBLIOGRAPHY ..................................................................................................................................................23
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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 .
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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
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4 In oduc ion
P ojec backg ound
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.
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
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.)
1 S oneham SJ. AYA su i o ship: The nex challenge. Cance 2020; 126: 2116-2119.
STRONG-AYA – No. 101057482 – D2.6
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• WP5: Scien i ic Coo dina ion and P ojec Managemen (Lead: NKI)
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
The epo ocuses on e iewing pa ien in ol emen and e alua ion p ac ices speci ically wi hin AYA
(Adolescen and Young Adul ) cance esea ch. The epo p o ides a a ge ed li e a u e e iew on pa ien
in ol emen and in ol emen e alua ion p ac ices wi h special a en ion o AYA (Adolescen and Young
Adul ) cance esea ch.
Key ake away poin s:
• Al hough e o s o in ol e pa ien s in AYA esea ch ha e begun, he numbe o such ini ia i es
emains ela i ely small.
• No s anda dized p ac ices exis in Eu ope o in ol ing AYAs wi h li ed expe ience o cance ,
highligh ing he need o con ex -speci ic policies and bes p ac ices.
• A wide ange o e alua ion amewo ks and guidelines o pa ien in ol emen a e a ailable in he
li e a u e, each wi h di e en app oaches and ocuses.
• Two guidelines aimed a imp o ing pa ien in ol emen speci ically in AYA esea ch ha e been
ecen ly published.
P elimina y Mapping o In ol emen P ac ices: The epo maps ou he ypes o pa ien in ol emen
p ac ices wi hin he STRONG AYA p ojec , ca ego izing hem in o 'consen ,' 'consul a ion,' and 'coope a ion'
p ac ices.
Recommenda ions o E alua ion Imp o emen : The epo concludes wi h sugges ions o enhancing
e alua ion amewo ks o pa ien in ol emen in esea ch p ojec s like STRONG AYA.
5 Mapping pa ien in ol emen p ac ices in STRONG AYA
Backg ound o his epo
This epo builds on he i s STRONG AYA S akeholde Fo um Mee ing on 27 Sep embe 2023: ‘Caugh in
he Middle: Iden i ying Gaps o Adolescen s and Young Adul s wi h Cance . This S akeholde Fo um mee ing
b ough oge he 70 pa icipan s (including heal hca e p o essionals, policy make s and pa ien
ep esen a i es) o p o ide eedback on he conso ium’s ongoing ac i i ies and o b ing AYA Communi y’s
a en ion o he p ojec . In engaging wi h s akeholde s du ing his e en , an addi ional aim was o signal
eme ging issues ha need u he elucida ion and examina ion du ing he de elopmen o STRONG AYA.
Du ing he e en , he issue o pa ien in ol emen su aced as a e u ning opic o con e sa ion. In andem,
in 2023, he STRONG AYA E hics and Regula o y ad iso y boa d (ERAB), also asked o cla i y STRONG AYA’s
app oach o pa ien in ol emen . The cu en epo join ly esponds o hese demands o cla i ica ion and
p o ides a mapping o ongoing e o s wi hin STRONG AYA o ealise di e en o ms o pa ien in ol emen .
Ano he aim is o summa ise ele an li e a u e ha can help o sui ably e alua e AYA pa ien in ol emen
p ac ices. As he STRONG AYA conso ium is cu en ly de eloping, his epo will no comp ehensi ely
STRONG-AYA – No. 101057482 – D2.6
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e alua e pa ien in ol emen bu will conclude wi h poin e s o s eng hening he e alua ion o pa ien
in ol emen du ing he u he cou se o he p ojec as well as u u e esea ch de elopmen .
5.1.1 STRONG AYA’s aims o pa ien in ol emen as pa o Ho izon Eu ope
F om i s incep ion, STRONG AYA unde w i es he impo ance o pa ien in ol emen in (da a-in ensi e)
heal h esea ch. STRONG AYA’s a en ion o in ol emen builds on decades o eme ging pa ien in ol emen
and pa ien ac i ism in Eu ope, which ha e led o he ins i u ionaliza ion and p o essionaliza ion o pa ien
in ol emen p ac ices in Eu opean esea ch p ojec s, including in HORIZON EUROPE.2 Pa ien in ol emen
has been sugges ed as a way o imp o e he e ec i eness, sus ainabili y, and quali y o medical inno a ions,
o expand pa ien choice, democ a ize heal hca e decision-making, emancipa e pa ien s, and p omo e
ai ness and jus ice in medicine.3 De ini ions o pa ien in ol emen , engagemen o pa icipa ion a y
widely. 4 A basic de ini ion is “an ac i i y ha is done ‘wi h’ o ‘by’ pa ien s o membe s o he public a he
han ‘ o’, ‘abou ’ o ‘ o ’ hem.”5 Many di e en kinds o in ol emen p ac ices p oli e a e: om in o ming
pa ien s abou esea ch and consul ing wi h pa ien s by means o ques ionnai es, o co-designing esea ch
design and ools and ac i ely seeking ep esen a ion by pa ien s on go e nance bodies.6 This a ia ion in
ypes o in ol emen is also exp essed by an expanding in ol emen ocabula y, such as ‘pa ien & public
in ol emen ’ (PPI), ‘public in ol emen and engagemen ’ (PI&E) ‘public engagemen ’ (PE), ‘pa ien
engagemen in esea ch’ (PER), ‘pa ien pa ne s in esea ch’ (PPR), ‘pa ien engagemen in esea ch’ (PEIR),
‘pa ien esea ch pa ne engagemen ’ (PRPE) and pa icipa o y design (PD).
STRONG AYA d aws on ex ensi e expe ience and expe ise by ou conso ium membe s in he
domain o pa ien in ol emen , spea headed by he co e expe ise o The Eu opean Cance O ganiza ion
(ECO) and You h Cance Eu ope (YCE). Wi hin he STRONG AYA conso ium, ECO akes he lead on
s akeholde in ol emen ac i i ies. ECO also has expe ience wo king on pa ien in ol emen ac i i ies,
including h ough i s Pa ien Ad iso y Commi ee and ole in o he EU- unded p ojec s - in ha ega d, ECO
con ibu ed o a e y ecen handbook on he opic. YCE is leading a conso ium-speci ic STRONG-AYA Pa ien
Ad iso y Boa d (PAB), which is esponsible o co-c ea ing pla o ms o pa ien engagemen and co-
2 The HORIZON EUROPE unding scheme has unde lined he impo ance o ci il socie y pa icipa ion in “co-designing and co-c ea ing esponsible
esea ch and inno a ion agendas and con en s, p omo ing science educa ion, making scien i ic knowledge publicly accessible, and acili a ing
pa icipa ion by ci izens and ci il socie y o ganisa ions in i s ac i i ies.” Regula ions. Es ablishing Ho izon Eu ope – he F amewo k P og amme o
Resea ch and Inno a ion, laying down i s ules o pa icipa ion and dissemina ion, and epealing Regula ions (EU) No 1290/2013 and (EU) No
1291/2013. (2021). O icial Jou nal o he Eu opean Union, 170, 51.
3 Fo an o e iew o en isioned e ec s o pa ien in ol emen , see o example P ainsack, B. (2017). Pe sonalized Medicine: Empowe ed Pa ien s in
he 21s Cen u y? NYU P ess. Madden, M., & Speed, E. (2017). Bewa e Zombies and Unico ns: Towa d C i ical Pa ien and Public In ol emen in
Heal h Resea ch in a Neolibe al Con ex . F on ie s in Sociology, 2.
4 Baines e al. (2022) ound 133 e ms o desc ibe o ms o in ol emen , wi h ‘use -cen ed design’, ‘pa icipa o y design’ and ‘codesign’ mos
commonly used. Baines, R., B adwell, H., Edwa ds, K., S e ens, S., P ime, S., T edinnick-Rowe, J., Sibley, M., & Cha e jee, A. (2022). Meaning ul
pa ien and public in ol emen in digi al heal h inno a ion, implemen a ion and e alua ion: A sys ema ic e iew. Heal h Expec a ions, 1–14.
h ps://doi.o g/10.1111/hex.13506. Cas o, E. M., Van Regenmo el, T., Vanhaech , K., Se meus, W., & Van Hecke, A. (2016). Pa ien empowe men ,
pa ien pa icipa ion and pa ien -cen e edness in hospi al ca e: A concep analysis based on a li e a u e e iew. Pa ien Educa ion and Counseling,
99(12), 1923–1939. h ps://doi.o g/10.1016/j.pec.2016.07.026
5 Ocloo, J., & Ma hews, R. (2016). F om okenism o empowe men : P og essing pa ien and public in ol emen in heal hca e imp o emen . BMJ
Quali y & Sa e y, 25(8), 626–632. h ps://doi.o g/10.1136/bmjqs-2015-004839. Addi ionally, a use ul dis inc ion has been made be ween indi idual
and collec i e pa ien pa icipa ion: “Indi idual pa ien pa icipa ion e ol es a ound a pa ien s’ igh s and oppo uni ies o in luence and engage in
decision making abou hei ca e h ough a dialogue a uned o a pa ien ’s p e e ences, po en ial and a combina ion o his expe ien ial and he
p o essional’s expe knowledge. Collec i e pa ien pa icipa ion is he con ibu ion o pa ien s o hei ep esen ing o ganiza ions in shaping heal h
and social ca e se ices by means o ac i e in ol emen in a ange o ac i i ies a he indi idual, o ganiza ional and policy le el ha combine
expe ien ial and p o essional knowledge.” Cas o, E. M., Van Regenmo el, T., Vanhaech , K., Se meus, W., & Van Hecke, A. (2016). Pa ien
empowe men , pa ien pa icipa ion and pa ien -cen e edness in hospi al ca e: A concep analysis based on a li e a u e e iew. Pa ien Educa ion
and Counseling, 99(12), 1923–1939. h ps://doi.o g/10.1016/j.pec.2016.07.026.
6 Ocloo, J., & Ma hews, R. (2016). F om okenism o empowe men : P og essing pa ien and public in ol emen in heal hca e imp o emen . BMJ
Quali y & Sa e y, 25(8), 626–632. h ps://doi.o g/10.1136/bmjqs-2015-004839.
STRONG-AYA – No. 101057482 – D2.6
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da a will be exchanged be ween ins i u ions, no da a ans e ag eemen s o addi ional pa ien consen will be needed.” “I o when
PRO da a beyond he ou comes collec ed as pa o clinical ca e and p e ious s udies a e desi ed o STRONG AYA in acco dance wi h
ou inalized COS, a new p o ocol o amendmen (in acco dance o IRB guidelines) will be de eloped.”
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323334
Figu e 2: ypes o pa ien in ol emen in STRONG AYA, con inued
STRONG-AYA – No. 101057482 – D2.6
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F amewo ks o imp o ing and e alua ing pa ien in ol emen in (AYA cance )
esea ch
In he p e ious sec ion we ha e lis ed examples o pa ien in ol emen p ac ices cu en ly pa o he
STRONG AYA p ojec . These p ac ices abide by gene al guidelines se in he STRONG-AYA in o ma ion
go e nance and e hics amewo k.35 In pas decades, pa ien o ganiza ions ha e allied o o mula ing and
moni o ing speci ic c i e ia o he e alua ion o pa ien in ol emen p ac ices. The Eu opean Pa ien Fo um,
o example, e lec ing on HORIZON EUROPE, has called o “clea c i e ia o meaning ul pa ien in ol emen
in calls o be de eloped oge he wi h pa ien o ganisa ions, o a oid esea che s ea ing ‘pa ien
in ol emen ’ as a ick-box exe cise as hey s ill oo o en do, and o ewa d hose p ojec s ha p ac ice
genuine co-c ea ion and co-p oduc ion.”36
The e alua ion o in ol emen p ac ices is a complex issue: a wide a ie y o amewo ks and
guidelines exis in academic and p o essional li e a u e, wi h di e ing app oaches and ocus.37 A 2019
sys ema ic e iew (G eenhalgh e al. 2019) o ools, amewo ks, benchma ks, guidelines and checklis s o
pa ien in ol emen in esea ch ound 56 ele an amewo ks. Analysing hese amewo ks o in ol emen
p ac ices, G eenhalgh e al. dis inguished i e main ypes: powe - ocused amewo ks, p io i y-se ing
amewo ks, s udy- ocused amewo ks, epo - ocused amewo ks and pa ne ship- ocused amewo ks.
Recen ly, wo guidelines speci ically cen ed on imp o ing pa ien in ol emen in AYA esea ch ha e been
published.38 Bu ge s e al. (2022) de eloped a lis o ips o he in ol emen o pa ien s as esea ch pa ne s
in he con ex o a esea ch ha conduc ed quali a i e in e iews wi h AYA pa ien s wi h unce ain and/o
poo cance p ognosis (UPCP) o be e unde s and hei daily li e challenges, coping, and heal hca e needs.39
32 Re: pa ien in ol emen in PROM design, see D1.1. Digi al echnology equi emen s, Repo including speci ica ion o digi al
echnology selec ion, adap a ion and/o de elopmen .
33 Re: pa ien in ol emen in o e all conso ium wo k, see D 4.1 S akeholde in ol emen and engagemen plan.
34 Re: pa ien in ol emen in o e all go e nance, see D4.2 Bylaws o he Pa ien Ad iso y Boa d (PAB). a 25EU/hou bu a e ee o
op ou om any compensa ion. Indi idual con ac s will be d a ed in ag eemen wi h YCE, he lead bene icia y who will emune a e
PAB membe s’ ime (up o 1,500EU pe membe o he du a ion o he p ojec ). In case membe s o he PAB will be asked o
pa icipa e in any in-pe son ac i i ies o Gene al Assembly, YCE may compensa e up o 8 hou s pe day o a endance. See also
Monge-Mon e o, C., O’Callaghan, S., Riz i, K., Kosi , U., & Gi bu, V. (2023). Recommenda ions o Equi able, Di e se, and Inclusi e
Cance Ca e in Eu ope. You h Cance Eu ope. Eu opean Commission co- unded p ojec : EU-CAYAS-NET EU4H-2021-PJ-04101056918.
h ps://www.you hcance eu ope.o g/ he-eu opean-ne wo k-o -you h-cance -su i o s-launches-i s- ecommenda ions- o -
equi able-di e se-and-inclusi e-cance -ca e-in-eu ope.
35 D2.2. STRONG-AYA in o ma ion go e nance and e hics amewo k.
36 Ho izon Eu ope mus in es mo e in heal h o suppo high-quali y, accessible and equi able heal h sys ems. (2018). Eu opean
Pa ien s Fo um. h ps://www.eu-pa ien .eu/news/la es -ep -news/2018/ho izon-eu ope-mus -in es -mo e-in-heal h- o-suppo -
high-quali y-accessible-and-equi able-heal h-sys ems/.
37 G eenhalgh, T., Hin on, L., Finlay, T., Mac a lane, A., Fahy, N., Clyde, B., & Chan , A. (2019). F amewo ks o suppo ing pa ien
and public in ol emen in esea ch: Sys ema ic e iew and co-design pilo . Heal h Expec a ions, 22(4), 785–801.
h ps://doi.o g/10.1111/hex.12888.
38 an Ham, C. R., Bu ge s, V. W. G., Sleeman, S. H. E., Dickhou , A., Ha hoo n, N. C. G. L., Man en-Ho s , E., an Eenbe gen, M. C.,
& Husson, O. (2022). A quali a i e s udy on he in ol emen o adolescen s and young adul s (AYAs) wi h cance du ing mul iple
esea ch phases: “Plan, s uc u e, and discuss.” Resea ch In ol emen and Engagemen , 8(1), 30. h ps://doi.o g/10.1186/s40900-
022-00362-w. O eisi, N., Cheng, V., Taylo , D., Bech hold, H., Ba nes, M., Jansen, N., McTagga -Cowan, H., B o o, L. A., Peacock, S.,
Hanley, G. E., Gill, S., Raya , M., S ikan han, A., & De Ve a, M. A. (2024). Meaning ul Pa ien Engagemen in Adolescen and Young
Adul (AYA) Cance Resea ch: A F amewo k o Quali a i e S udies. Cu en Oncology, 31(4), A icle 4.
h ps://doi.o g/10.3390/cu oncol31040128.
39 Bu ge s, V. W. G., Dickhou , A., Ha hoo n, N. C. G. L., F issen, S. A. M. M., Noo dhoek, M. J., F anssen, S. A., Reu e s, M. J. P., an
de G aa , W. T. A., & Husson, O. (2023). In ol ing adolescen s and young adul s (AYA) wi h an unce ain o poo cance p ognosis
as esea ch pa ne s. Ac a Oncologica, 62(8), 961–968. h ps://doi.o g/10.1080/0284186X.2023.2238554.
STRONG-AYA – No. 101057482 – D2.6
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O eisi e al. (2024) published a amewo k o pa ien esea ch pa ne s (PRPs) in he con ex o a esea ch
ha employs quali a i e me hods ( ocus g oups) o explo e he impac s o cance diagnosis and ea men
on he sexual and ep oduc i e heal h o AYA cance pa ien s [ igu e 3].40
Figu e 3: Collabo a i e and i e a i e amewo k o meaning ul pa ien engagemen in adolescen and young adul (AYA) cance
quali a i e esea ch. De eloped by and ep oduced om O eisi e al. 202441
The s udies o Bu ge s e al. 2022 and O eisi e al. 2024 a e close o wha G eenhalgh e al. ha e
ypi ied as “s udy- ocused” amewo ks o e alua ing in ol emen p ac ices, whe eby esea che s
dis inguish di e en phases in a esea ch p ojec linked o a ious po en ial in ol emen challenges and
issues. Bo h guidelines ocus on pa ien s as esea ch pa ne s - i.e. on consul a ion and coope a ion by means
40 O eisi, N., Cheng, V., Taylo , D., Bech hold, H., Ba nes, M., Jansen, N., McTagga -Cowan, H., B o o, L. A., Peacock, S., Hanley, G.
E., Gill, S., Raya , M., S ikan han, A., & De Ve a, M. A. (2024). Meaning ul Pa ien Engagemen in Adolescen and Young Adul (AYA)
Cance Resea ch: A F amewo k o Quali a i e S udies. Cu en Oncology, 31(4), A icle 4.
h ps://doi.o g/10.3390/cu oncol31040128.
41 O eisi, N., Cheng, V., Taylo , D., Bech hold, H., Ba nes, M., Jansen, N., McTagga -Cowan, H., B o o, L. A., Peacock, S., Hanley, G.
E., Gill, S., Raya , M., S ikan han, A., & De Ve a, M. A. (2024). Meaning ul Pa ien Engagemen in Adolescen and Young Adul (AYA)
Cance Resea ch: A F amewo k o Quali a i e S udies. Cu en Oncology, 31(4), A icle 4.
h ps://doi.o g/10.3390/cu oncol31040128.
STRONG-AYA – No. 101057482 – D2.6
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o di ec in ol emen o indi idual pa ien s. No pa o he ocus o hese AYA guidelines a e in ol emen
h ough pa ien ep esen a i e o ganiza ions, he ole o pa ien s in go e nance o esea ch conso ia, as
well as p ocedu es o pa ien consen . As G eenhalgh e al. 2019 ha e emphasized, amewo ks o e alua ing
pa ien in ol emen de eloped in he con ex o one esea ch may no be (en i ely) i ing o o he con ex s.
Resea ch p ojec s may need o de elop a ailo -made e alua ion amewo k based, o example, on a
pa icipa o y wo kshop in which pa ien s a e in ol ed in designing he e alua ion c i e ia and amewo k o
pa ien in ol emen p ac ices.42 In he nex sec ion, we lis issues ela ed o pa ien in ol emen and
e alua ion o in ol emen ha dese e special a en ion in he con ex o he STRONG AYA p ojec .
7 Expanding cu en amewo ks o e alua ing pa ien in ol emen
o i wi h STRONG AYA
As ou lined abo e, amewo ks o e alua ing pa ien in ol emen in he domain o AYA ca e and esea ch
a e s ill a e (ou esea ch u ned up wo guidelines, Bu ge s e al. 2022 & O eisi e al. 2024) and need o be
adap ed o he a ie y o in ol emen p ac ices ha a e pa o he STRONG AYA conso ium. Based on
analysis o AYA esea ch li e a u e, as well as expe ience by conso ium membe s, pa icula ly wi hin he
Eu opean Cance O ganisa ion and You h Cance Eu ope, below is a non-exhaus i e lis o aspec s ha
dese e u he a en ion in ela ion o imp o ing and moni o ing he quali y o in ol emen p ac ices in AYA
wo k.
Adequa e s uc u es o inancially compensa ing AYA in ol emen wo k
Wi hin STRONG AYA, You h Cance Eu ope has se up pla o ms o pa ien in ol emen , including a Pa ien
Ad iso y Boa d. In hese a ious asks, inancial compensa ion o wo k by pa ien ad oca es is ou lined, i.e.
he p ocess is made anspa en and se s expec a ions o how much ime hey can de o e.43 Howe e , e en
when inancial compensa ion is secu ed o pa ien in ol emen wo k, cu en s uc u es and mechanisms
o compensa ion migh no i he inancial ci cums ances in which AYA pa ien s ind hemsel es. Fo
example, adolescen s and young adul s in ea men o o ea men may be ecei ing disabili y pay, which
can con lic wi h he inancial paymen s hey ecei e because o in ol emen wo k. AYAs will need access
o expe s wi h knowledge o hese inancial egula ions in hei home coun y. A p esen , EU esea ch
p ojec s a e o en no equipped wi h adequa e consul a ion on his issue.
42 ”Appendix S2: Facili a o no es o PPI build-you -own- amewo k wo kshop.” in G eenhalgh, T isha, Lisa Hin on, Te esa Finlay, Alas ai
Mac a lane, Nick Fahy, Ben Clyde, and Alan Chan . 2019. “F amewo ks o Suppo ing Pa ien and Public In ol emen in Resea ch:
Sys ema ic Re iew and Co-Design Pilo .” Heal h Expec a ions 22 (4): 785–801. h ps://doi.o g/10.1111/hex.12888.
43 D4.2. Bylaws o he Pa ien Ad iso y Boa d (PAB) (M6): Te ms o e e ence and p inciples o he selec ion o pa icipan s, ope a ion and
go e nance o he PAB. “All membe s o he PAB will be o e ed mone a y compensa ion o hei ime and wo k a 25EU/hou bu a e ee
o op ou om any compensa ion. Indi idual con ac s will be d a ed in ag eemen wi h YCE, he lead bene icia y who will emune a e
PAB membe s’ ime (up o 1,500EU pe membe o he du a ion o he p ojec ). In case membe s o he PAB will be asked o pa icipa e in
any in-pe son ac i i ies o Gene al Assembly, YCE may compensa e up o 8 hou s pe day o a endance. Any a el a angemen s will need
o be ag eed upon wi h he en i e Conso ium. In o de o p o ide adequa e jus i ica ion and eligibili y o any co esponding cos s, PAB
membe s will ha e he esponsibili y o keeping hei own eco d o ime spen on he p ojec (wi h guidance om he PAB sec e a ia ).
The PAB sec e a ia will ake esponsibili y o check all co espondence be ween he ime decla ed by he PAB membe s and hei ac ual
pa icipa ion in he p ojec .”
STRONG-AYA – No. 101057482 – D2.6
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Equi y, Di e si y and Inclusion (EDI) in AYA in ol emen wo k
Resea che s ha e poin ed o he ba ie s and bu dens aced by ma ginalised AYA pa ien s in pa icipa ing in
pa ien ep esen a ion and in ol emen p ac ices.44 To ealise he exis ing ecommenda ions and expe ise
wi h EDI in AYA ca e, adequa e compensa ion is i al, bu no enough. Imp o ing he unding o pa icipa ion
o p o essionals wi h EDI expe ise is necessa y, as well as suppo ing he pa icipa ion o ma ginalised g oups
wi hin which we migh be able o iden i y AYAs wi h li ed expe ience ha can enhance inclusi i y in p ac ice,
pa icula ly o p omo e EDI o acial and e hnic mino i y AYAs.45 EDI c i e ia a e al eady pa o STRONG
AYA’s in ol emen p ac ices, o example in he ec ui men p ocess o he Pa ien Ad iso y Boa d.46 Going
o wa d, i is impo an o employ simila EDI c i e ia and s anda ds o AYA cance esea ch eams as well.
By ensu ing di e si y ac oss all ace s o he esea ch p ocess, EDI in pa ien in ol emen can be mo e eadily
and sa is ac o ily accomplished. Mo eo e , ecen esea ch in o he a i udes owa d EDI in he AYA
popula ion has showed ha di e si y wo k should include ca ego ies beyond gende , ace and e hnici y, such
e.g. disabili y and neu odi e si y.47
Adequa e pa ien ep esen a ion
As men ioned du ing he 2023 STRONG AYA s akeholde o um, “adequa e pa ien ep esen a ion” is
impo an , as pa ien in ol emen in la ge esea ch conso iums o en akes he shape o consul a ion
h ough pa ien ep esen a i es as well as p o essionals wo king a pa ien ad ocacy o ganiza ions.48 The
e alua ion o pa ien ep esen a ion p ac ices is a complex and con es ed issue: who is ega ded as he
p ope ep esen a i e a speci ic in ol emen momen s in heal h esea ch is con ex -dependen and
con ingen on shi ing alues and pe spec i es abou he aims o ep esen a ion wo k.49 To be able o do
ep esen a ion wo k, o example as a pe son wi h li ed expe ience o AYA, equi es subs an ial le els o
knowledge, adap i e skills ( o adjus o a iable demands by a di e se conso ium), ee ime, inancial
44 Cheung, C. K., Tucke -Seeley, R., Da ies, S., Gilman, M., Mille , K. A., Lopes, G., Be z, G. D., Ka e e e-Vi ima, T., Helbling, L. E., Thomas, B.
N., & Lewis, M. A. (2021). A call o ac ion: An i acis pa ien engagemen in adolescen and young adul oncology esea ch and ad ocacy.
Fu u e Oncology, 17(28), 3743–3756. h ps://doi.o g/10.2217/ on-2020-1213. Cheung, C. K., Mille , K. A., Goings, T. C., Thomas, B. N., Lee,
H., B andon, R. E., Ka e e e-Vi ima, T., Helbling, L. E., Causadias, J. M., Ro h, M. E., Be haud, F. M., Jones, L. P., Ross, V. A., Be z, G. D.,
Simmons, C. D., Ca e , J., Da ies, S. J., Gilman, M. L., Lewis, M. A., … Tucke -Seeley, R. D. (2024). BIPOC Expe iences o (an i-)Racis Pa ien
Engagemen in Adolescen and Young Adul Oncology Resea ch: An Elec onic Delphi S udy. Fu u e Oncology, 20(9), 547–561.
h ps://doi.o g/10.2217/ on-2023-0771.
45 Cheung, C. K., Tucke -Seeley, R., Da ies, S., Gilman, M., Mille , K. A., Lopes, G., Be z, G. D., Ka e e e-Vi ima, T., Helbling, L. E., Thomas, B.
N., & Lewis, M. A. (2021). A call o ac ion: An i acis pa ien engagemen in adolescen and young adul oncology esea ch and ad ocacy.
Fu u e Oncology, 17(28), 3743–3756. h ps://doi.o g/10.2217/ on-2020-1213.
46 D. 4.2 Bylaws o he Pa ien Ad iso y Boa d (PAB). Men ions he selec ion c i e ia o PAB membe s, wi h he aim o maximizing di e se
knowledge, expe ience and expe ise while employing p inciples o Equi y, Di e si y and Inclusion (EDI). ”The EDI p inciples conside
di e si y o hough , expe ience, expe ise, geog aphical ep esen a ion, gende iden i y, educa ional s a us, heal h s a us and disabili y as
essen ial aspec s o deli e ing wo k i - o -pu pose o his mul ina ional p ojec .“
47 Monge-Mon e o, Ca men, S ewa O’Callaghan, Ka ie Riz i, U ska Kosi , and Vic o Gi bu. 2023. “Recommenda ions o Equi able,
Di e se, and Inclusi e Cance Ca e in Eu ope.” You Cance Eu ope. Eu opean Commission co- unded p ojec : EU-CAYAS-NET EU4H-2021-
PJ-04101056918. h ps://www.you hcance eu ope.o g/ he-eu opean-ne wo k-o -you h-cance -su i o s-launches-i s- ecommenda ions-
o -equi able-di e se-and-inclusi e-cance -ca e-in-eu ope/.
48 L’Hô e, M., Lo enzo i Sunye , N., & Couespel, N. (2024). Caugh in he Middle: Iden i ying Gaps o Adolescen s and Young Adul s (AYAs)
wi h Cance . Eu opean Cance O ganisa ion. h ps://www.eu opeancance .o g/ esou ces/publica ions/ epo s/iden i ying-gaps-
adolescen s-young-adul s-ayas-cance .h ml
49 Halloy, A naud, Emmanuelle Simon, and Fabienne Hejoaka. 2023. “De ining Pa ien ’s Expe ien ial Knowledge: Who, Wha and How
Pa ien s Know. A Na a i e C i ical Re iew.” Sociology o Heal h & Illness 45 (2): 405–22. h ps://doi.o g/10.1111/1467-9566.13588.
Mankell, Anna, and Mio F ed iksson. 2021. “Fede a i e Pa ien O ganiza ions in a Decen alized Heal h-Ca e Sys em: A Challenge o
Rep esen a ion?” Heal h 25 (6): 722–38. h ps://doi.o g/10.1177/1363459320912807.
STRONG-AYA – No. 101057482 – D2.6
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esou ces and willpowe .50 This se o equi emen s o en means ha a small g oup o a ailable, ained and
expe ienced pa ien s becomes equen ly app oached by s akeholde s and u n in o ecu en
ep esen a i es o ’expe pa ien s’.51 In pas yea s, wi h inc easing demands o pa ien ep esen a ion
p ac ices, pa ien o ganisa ions ha e become impo an in e media ies o ep esen a ion.52 They ha e
become endowed wi h inc easing esponsibili ies in ec ui ing i ing ep esen a i es, ensu ing di e si y
h ough ec ui ing a b oad g oup o ep esen a i es, acili a ing aining o ep esen a i es and p e en ing
o ms o a igue and bias wi hin he pool o ep esen a i es. To play his in e media y ole, pa ien
o ganisa ions should be acili a ed and inancially suppo ed, o example by p o iding s uc u al unding
(beyond p ojec -based unding) o build up a con inuous aining p og am o AYA cance pa ien
ep esen a i es.
Pa ien in ol emen wi h seconda y use o da a in da a-in ensi e heal h
esea ch
Resea ch on AYA-cance issues in STRONG AYA depends on he abili y o pool pe sonal heal h da a om
di e en coun ies o pe o m e ospec i e s udies, i.e. he ‘seconda y use’ o pe sonal heal h da a o
esea ch. A p esen , e hical use o seconda y da a in STRONG AYA is ensu ed h ough exis ing na ional
legisla ions ega ding pa ien consen and GDPR. A he same ime, a ecen EU-p oposal o he Eu opean
Heal h Da a space p oposes new legisla ion ha would inc ease seconda y da a use o acili a e esea ch.53
Wi hin his eme ging legisla ion, he ole o pa ien in ol emen is le unde ined. While pa ien con ol is
explici ly men ioned o p ima y use o heal hca e da a, he EHDS is no speci ic abou how and wha ype o
in o ma ion abou seconda y use o da a should be p o ided o pa ien s, no how pa ien s can pa ake in
go e nance o de elopmen p ac ices.54 The STRONG AYA p ojec has de eloped e o s o inqui e in o AYA
pa ien s’ a i udes owa ds da a p o ec ion (see sec ion on consul a ion). Mo eo e , he conso ium can
d aw on ecen s udies abou heal h da a sha ing a i udes owa ds seconda y use o da a, which show ha
pa ien s’ app o al o seconda y da a use is dependen on con ex and pu pose o use and ype o use .55
50 Eghe , Claudia, and Olga Z ona e a. 2024. “Knowledge-Based Rep esen a ion: Pa ien Engagemen in D ug De elopmen .” Heal h
Expec a ions 27 (1): e13912. h ps://doi.o g/10.1111/hex.13912.
51 Pols, Jeanne e. 2014. “Knowing Pa ien s: Tu ning Pa ien Knowledge in o Science.” Science, Technology, & Human Values 39 (1): 73–97.
h ps://doi.o g/10.1177/0162243913504306.
52 Mo ei a, Tiago. 2015. “Unde s anding he Role o Pa ien O ganiza ions in Heal h Technology Assessmen .” Heal h Expec a ions 18 (6):
3349–57. h ps://doi.o g/10.1111/hex.12325.
53 Eu opean Commission. P oposal o a egula ion o he Eu opean Pa liamen and o he Council on he Eu opean Heal h Da a Space. 3
May 2022. h ps:// eu -lex.eu opa.eu/ esou ce.h ml?u i=cella :db d8974-cb79-11ec-b6 4- 01aa75ed71a1.000102/DOC_1& o ma =PDF.
54 Membe s a es a e eques ed o de elop heal h da a access bodies (HDABs, a public sec o body) o c ea e a go e nance s uc u e ha
acili a es seconda y use. Saelae , Ma lies, Louise Ma hieu, Wannes Van Hoo , and B ech De leesschauwe . 2023. “Expanding Ci izen
Engagemen in he Seconda y Use o Heal h Da a: An Oppo uni y o Na ional Heal h Da a Access Bodies o Realise he In en ions o he
Eu opean Heal h Da a Space.” A chi es o Public Heal h 81 (1): 168. h ps://doi.o g/10.1186/s13690-023-01182-4.
55 A 2024 sys ema ic e iew o heal h da a sha ing a i udes ound mo e han a dozen s udies examining a i udes owa ds sha ing pe sonal
heal h da a and in o ma ion.S udies ound a highe in en ion o sha e da a o seconda y use co ela ed wi h a iables, younge age,
emale gende , highe educa ion le el, heal h ca e occupa ion, being whi e and egion o esidence (Eu ope and Middle Eas we e mo e
willing han No h Ame icans and Asians). O he s udies ound ha younge pa ien s we e mo e uncom o able han olde pa ien s o
sha e da a. Gene ally, o many pa ien s, sha ing seconda y da a was condi ional upon speci ic use pu poses and speci ic use s, being
in o med, ha ing a choice, pe cei ed use, us in da a p o ec ion, use by a us wo hy ac o , such as a go e nmen agency o public
ins i u ion. Cascini, Fidelia, Ana Pan o ic, Yazan A. Al-Ajlouni, Vale ia Puleo, Lucia De Maio, and Wal e Riccia di. 2024. “Heal h Da a Sha ing
A i udes owa ds P ima y and Seconda y Use o Da a: A Sys ema ic Re iew.” eClinicalMedicine 71 (May).
h ps://doi.o g/10.1016/j.eclinm.2024.102551.
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Howe e , as esea che s ha e emphasized, expe imen s wi h new ways o in ol ing ci izens and pa ien s
wi h he issue o seconda y heal h da a a e necessa y.56
Unde s anding pa ien a i udes owa ds pa ien in ol emen wo k in he AYA
cance ield
Resea ch on (AYA cance ) pa ien a i udes owa ds in ol emen in esea ch p ac ices has shown ha
a i udes a y acco ding o di e en age g oups. Adolescen s a e ound o wan o ake a less p oac i e and
in ol ed ole compa ed o olde (20+) pa ien s.57 O he a iables may also be impo an in a i udes owa ds
pa ien in ol emen , such as gende , income, educa ion le el, ha ing a amily. While he e is esea ch in o
pa icipa ion a i udes o pa ien s as esea ch subjec s, including easons o esponse o non- esponse by
AYA pa ien s o in i a ions o en ol in PRO-s udies, his esea ch does no add ess he opic o pa ien
in ol emen in esea ch.58 Mo e esea ch is necessa y o unde s and mo i a ions o – and a i udes owa ds
– pa ien in ol emen on he pa o pa ien s. Fu u e esea ch should also include a s udy in o he way
pa ien s a e in o med abou he alue o pa ien in ol emen (be o e pa icipa ing) as well as me hods o
e lec ion and e alua ion wi h pa ien s a e in ol emen p ac ices.
8 Conclusion
This epo has p o ided a a ge ed li e a u e e iew o pa ien in ol emen p ac ices and pa ien
in ol emen e alua ion p ac ices ocused on he ield o AYA cance esea ch. In ecen yea s, e o s o
in ol e pa ien s in AYA esea ch ha e been in oduced wi hin he AYA popula ion, hough he numbe o
ini ia i es is s ill ela i ely small. Despi e he widesp ead calls o in ol emen p ac ices, implemen a ion,
moni o ing and e alua ion p ac ices o AYA pa icipa ion a e lacking in many Eu opean coun ies. The e a e
cu en ly no Eu opean s anda ds o in ol emen p ac ices wi h AYAs wi h li ed expe ience and con ex -
dependen policies and bes p ac ices should be de eloped. This epo has o e ed a p elimina y mapping
o he ype o pa ien in ol emen p ac ices ha a e pa o he STRONG AYA p ojec , showing examples o
‘consen ’, ‘consul a ion’ and ‘coope a ion’ p ac ices. The epo has also discussed he opic o e alua ion
amewo ks o pa ien in ol emen in ela ion o STRONG AYA’s in ol emen e o s. A wide a ie y o
amewo ks and guidelines exis in academic and p o essional li e a u e, wi h di e ing app oaches and ocus.
Recen ly, wo guidelines speci ically cen e ed on imp o ing pa ien in ol emen in AYA esea ch ha e been
published. The epo ends wi h ecommenda ions o imp o ing e alua ion amewo ks o pa ien
in ol emen in he con ex o esea ch p ojec s such as STRONG AYA.
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