P ojec ac onym: Heal hDa a@PT
P ojec ull i le: Se ing up a Heal h Da a Access Body in Po ugal and laying he
na ional ounda ions o EHDS2
WP6 - Na ional Da ase Ca alogue o Heal h Da a
D6.1 - Na ional da ase ca alogue equi emen s and
speci ica ions
P ojec Coo dina o
SPMS – Se iços Pa ilhados do Minis é io da Saúde,
E.P.E. (Po ugal)
S a da e o he p ojec
2023-11-01
Du a ion
48 mon hs
Wo k Package
WP6 - Na ional Da ase Ca alogue o Heal h Da a
S a us
In P og ess
Documen Ve sion
1.0
Dissemina ion Le el
PU – Public
Main Au ho (s)
Nuno C uz, And é Fon es, João San os, And eia
Se ano, Rúben Je ónimo, Vanessa Lima, So ia Fe ei a,
Sa a Ma ques
Due Da e
2027-10-31
Deli e able Da e
2025-08-18
Deli e able Type
R — Documen , epo
This p ojec is co- unded by he Eu opean Union’s EU4Heal h (2021-2027) p og amme unde he
G an Ag eemen N . 101128332. Views and opinions exp essed a e howe e hose o he
au ho (s) only and do no necessa ily e lec hose o he Eu opean Union o Eu opean Heal h
and Digi al Execu i e Agency (HADEA, he ‘g an ing au ho i y’). Nei he he Eu opean Union no
he g an ing au ho i y can be held esponsible o hem.
Re . A es(2025)6814655 - 22/08/2025
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D6.1 Na ional da ase ca alogue equi emen s and speci ica ions
Ve sion 1.0
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Documen Re ision His o y
Ve sion
Da e
Summa y o main changes
Au ho (s)
0.1
2023-12-01
Documen c ea ion and Table o Con en
d a ing
Sa a Ma ques
0.2
2024-04-01
Documen s uc u e; In oduc ion;
Heal hDCAT-AP
Nuno C uz
0.3
2024-07-30
Backg ound: da ase s ca alogue, ocabula y,
na ional da ase s ca alogue – equi emen s
and ecommenda ions; heal hdca -ap: dca
s dca -ap, d , heal hdca -ap; po uguese
con ex ; Use cases
Nuno C uz, And é Fon es,
João San os, And eia
Se ano
0.4
2025-01-28
Use cases; Requi emen s and Speci ica ions
inal d a
Nuno C uz, And é Fon es,
João San os, And eia
Se ano, Vanessa Lima,
So ia Fe ei a, Sa a
Ma ques
0.5
2025-05-15
Conclusion o he 1s d a o he po uguese
na ional da ase s ca alogue equi emen s
and speci ica ions inal d a (sec ion 4);
conclusion o he “Building up he
Po uguese na ional da ase s ca alogue”
sec ion (sec ion 5)
Nuno C uz, João San os,
And eia Se ano, Sa a
Ma ques
0.6
2025-06-02
Re ision o he i s d a o he po uguese
na ional da ase s ca alogue equi emen s
and speci ica ions wi h echnical eams.
Nuno C uz, João San os,
And eia Se ano, Sa a
Ma ques, Vanessa Lima,
Rúben Je ónimo
0.7
2025-06-20
P epa a ion o he inal d a o he
po uguese na ional da ase s ca alogue
equi emen s and speci ica ions.
Nuno C uz, João San os,
Sa a Ma ques, Rúben
Je ónimo
0.8
2025-08-08
Final e ision and co ec ions
Sa a Ma ques
1.0
2025-08-18
Final e sion o submission
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Execu i e Summa y
This documen cons i u es he deli e able D6.1 “Na ional da ase ca alogue equi emen s and
speci ica ions” pa o he wo k package 6 “Na ional Da ase Ca alogue o Heal h Da a” o he
Heal hDa a@PT p ojec .
To acili a e c oss-bo de collabo a ion and p omo e he e ec i e ( e)use o heal h da a ac oss
Eu ope, he Eu opean Heal h Da a Space (EHDS) was es ablished as a uni ied amewo k o
heal h da a. This ini ia i e add esses key challenges such as he agmen a ion o da a
eposi o ies, he lack o ha monized in e na ional s anda ds, and he inconsis en me hods o
loca ing and eques ing access o heal h da a.
Unde his egula ion, Membe S a es a e equi ed o es ablish a Heal h Da a Access Body which,
among o he esponsibili ies, mus p o ide in o ma ion abou he a ailable da ase s o
seconda y use pu poses and hei key cha ac e is ics. This ensu es ha po en ial heal h da a
use s a e in o med o essen ial de ails and can ind and assess he ele ance o he da ase s o
hei needs. This machine- eadable da ase ca alogue e e s o a sys ema ically o ganized
collec ion o da ase desc ip ions in he o m o me ada a, including a public, use -o ien ed
sec ion h ough which in o ma ion on indi idual da ase pa ame e s is elec onically accessible
ia an online and public na ional po al.
In D6.1, he ou lining o he unc ional and echnical speci ica ions and equi emen s o he
Heal hDa a@PT’s da ase s ca alogue a e de ined based on se e al key sou ces: he
“Requi emen s Ca alogue o Scale-up Ve sion (D02.03)” p o ided by DG SANTÉ, he
equi emen s o he EHDS Regula ion, and a landscape analysis o ca alogue- ela ed
ecommenda ions esul ing om TEHDAS, Heal hyCloud, he EHDS2 Pilo , and TEHDAS2
(pa icula ly TEHDAS2 WP5 deli e ables). Addi ionally, insigh s om da ase ca alogues om
Sweden, No way, Finland, and F ance ha e been conside ed, as well as he ex ensi e wo k on
in e ope abili y and on he s anda diza ion o elec onic heal h da a wi hin he Po uguese
con ex , which pa e he way o he g oundwo k necessa y owa ds he de elopmen o he
Po uguese na ional me ada a ca alogue.
The esul ing amewo k is p esen ed in Sec ion 4 o his deli e able, in which he de ined
equi emen s and speci ica ions o he Heal hDa a@PT da ase ca alogue a e ou lined
gua an eeing alignmen wi h he EHDS equi emen s. Fu he mo e, de ails on he i s da ase s
unde cons uc ion and hei me ada a speci ica ions, as well as sc eensho s o he p elimina y
e sion o he ca alogue unde de elopmen by Augus 2025 can be consul ed in sec ions 5.1,
5.2 and 5.3 o his documen , espec i ely.
The amewo k ou lined in sec ions 4 and 5 will go e n he na ional da ase s design and
implemen a ion h oughou Heal hDa a@PT.
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Table o Con en s
Execu i e Summa y .................................................................................................. ii
Abb e ia ions and Ac onyms .................................................................................. iii
1. In oduc ion ......................................................................................................... 1
1.1. Backg ound ....................................................................................................................... 1
1.2. Na ional Da ase s Ca alogue ............................................................................................. 4
2. Scope o his Deli e able ...................................................................................... 6
3. Landscape analysis on equi emen s and speci ica ions ........................................ 7
3.1. Ga he ed ecommenda ions om Eu opean ini ia i es ................................................... 7
3.1.1. TEHDAS ................................................................................................................... 7
3.1.2. Heal hy Cloud ......................................................................................................... 8
3.1.3. EHDS2 Pilo ............................................................................................................. 9
3.1.4. TEHDAS2 and Eu opean Commission’s documen s ................................................ 9
3.2. The Eu opean S anda d o me ada a: Heal hDCAT-AP .................................................. 10
3.3. Examples o ope a ional Na ional Da ase Ca alogues ................................................... 18
3.3.1. Swedish ca alogue ................................................................................................ 19
3.3.2. No wegian ca alogue ............................................................................................ 22
3.3.3. Finnish (Finda a) ca alogue ................................................................................... 26
3.3.4. F ench ca alogue .................................................................................................. 28
3.4. Fai Da a Poin s ............................................................................................................... 31
3.5. Cu en Po uguese Con ex ........................................................................................... 32
3.5.1. The Po uguese NHS T anspa ency Po al ............................................................ 32
3.5.2. O he na ional de elopmen s ............................................................................... 34
4. Requi emen s and Speci ica ions o he Po uguese Na ional Da ase s Ca alogue ..
.......................................................................................................................... 36
4.1. A public na ional po al holding he na ional da ase s ca alogue .................................. 36
4.2. Da ase s desc ip ion – Heal hDCAT-AP s anda d and a iables ...................................... 39
4.3. Da ase s c ea ion, main enance, s o age, e iew and audi abili y ................................. 39
4.4. Ca alogue Backend .......................................................................................................... 40
4.5. API o he da a access applica ion/da a eques o m po al ........................................ 41
4.6. Me ada a inges ion ......................................................................................................... 41
4.7. Ca alogue API o synch onisa ion wi h Heal hDa a@EU da ase s ca alogue upon CRUD
ope a ions ....................................................................................................................... 42
4.8. Non- unc ional equi emen s ......................................................................................... 42
5. Building up he na ional da ase s ca alogue ........................................................ 44
5.1. Da ase Speci ica ions ..................................................................................................... 44
5.2. Me ada a speci ica ions .................................................................................................. 46
5.3. nHDsC Mock-up............................................................................................................... 47
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5.4. Na ional Implemen a ion ................................................................................................ 48
6. Concluding Rema ks ........................................................................................... 49
7. Bibliog aphy ....................................................................................................... 50
Annexes ................................................................................................................. 52
Annex 1. Heal hyCloud WP3 ecommenda ions .................................................................... 53
Annex 2. Manda o y P ope ies o he Heal hDCAT-AP S anda d ........................................ 54
D6.1 Na ional da ase ca alogue equi emen s and speci ica ions
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Lis o Figu es
Figu e 1. An example o a da ase s ca alogue ( e ie ed om EUCAIM p ojec ). On he le o
he image, expandable lis s o di e en il e s a e a ailable, as well as a ee- ex sea ch ba . ... 3
Figu e 2. Da a use s’ jou ney in he EHDS, sou ced om TEHDAS (G aphic by Topias Dean,
SITRA). [9] ...................................................................................................................................... 5
Figu e 3. Rep esen a ion on how he di e en s anda ds expand on each o he : RDF wo king as
he co e ounda ion o he DCAT s anda d, u he ex ensions inc ease hei speci ici y. ......... 10
Figu e 4. Heal hDCAT-AP manda o y p ope ies o he "Da ase " class. Exce p om o iginal in
[19]. ............................................................................................................................................. 12
Figu e 5. Example o a da ase in he EHDS2 Pilo Sandbox. In column a he le , he i s
ec angle ep esen s he cu en DCAT-AP p ope y ype (M - Manda o y, R-Recommended, O-
Op ional) when applicable, and he second ec angle ep esen s he Heal hDCAT-AP p ope y
ype. ............................................................................................................................................ 15
Figu e 6. Heal hDCAT-AP edi o , a ailable a h p://ehds.heal hda apo al.eu/edi o 2/
(sc eensho om he e sion a 20/03/2025). ............................................................................ 16
Figu e 7. Cu en e sion o he Heal hDCAT-AP Reco ds Sandbox, now ac ing as he online
backup o all da ase desc ip ions published ia he Edi o . ...................................................... 17
Figu e 8. Example o a da ase desc ip ion a ailable in he Heal hDCAT-AP Reco d Manage . .. 17
Figu e 9. Example o he in o ma ion depic ed o he use when il e ing by Regis y name. ... 20
Figu e 10. Example o he in o ma ion page o a egis e (U-CAN) in his Swedish ca alogue. . 21
Figu e 11. Example o he sub- egis e compa ison ool o empo al co e age in he Swedish
ca alogue. Th ee sub- egis e s we e selec ed, wi h empo al co e age o e lap exis ing only
be ween wo o hem. Consequen ly, a message is displayed o he use indica ing ha no
con empo a y da a is a ailable. .................................................................................................. 22
Figu e 12. Fi s page o he No wegian ca alogue, di ided in o wo sec ions ea u ing ools o
explo ing da a sou ces (a) and da a access guidelines (b). ......................................................... 23
Figu e 13. Example o he page layou o a da ase in he No wegian ca alogue. .................... 24
Figu e 14. Example o he a iable sea ch page, enabling sea ch using ee ex o applying
di e en il e s (p esen ed on he le ). The middle ab is au oma ically upda ed acco ding o
he chosen il e ing ype and p o ides mo e in o ma ion abou he selec ed i ems. On he igh ,
he lis o a iables, e ined acco ding o he applied il e s....................................................... 24
Figu e 15. An example o a a iable when sea ching o 'diabe es,' when a da a sou ce and a
da a collec ion has been chosen. A a iable g oup is selec ed (bu no ye ma ked) which
expands he in o ma ion in he ab designa ed o his pu pose. The lis o a iables
co esponding o he selec ed il e ing is e ined acco dingly. ................................................... 25
Figu e 16. Example o a sea ch o "smoking" in he que y o a iables wi hin he Finnish
na ional ca alogue. ...................................................................................................................... 26
Figu e 17. Example o a sea ch o da a esou ces in he Finnish ca alogue. ............................. 27
Figu e 18. Example o he page layou o he da a sou ce “Finish Cance Regis y”. ................ 27
Figu e 19. Example o a page layou o a da ase om he Cance Regis y in he Finnish
na ional ca alogue, highligh ing he op ion o download a iables in CSV o ma . .................... 28
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Figu e 20. Me ada a wo k low o me ada a synch oniza ion be ween na ional ca alogues and
he nHDsC. ................................................................................................................................... 29
Figu e 21. F ench Da a Ca alogue sea ch unc ions. Exis ing il e s a e "medical domain" and
"da a ca ego y". .......................................................................................................................... 30
Figu e 22. F ench Da a Ca alogue, example o a da ase egis y. In o ma ion includes da a
con olle and scien i ic manage , popula ion o in e es , da ase size, empo al co e age,
p o enance, da abase documen a ion, e c. ................................................................................ 31
Figu e 23. Po uguese NHS T anspa ency Po al Ca alogue. ....................................................... 32
Figu e 24. Po uguese NHS T anspa ency Po al Ca alogue - An ibio ics da ase . ...................... 33
Figu e 25. Po uguese NHS T anspa ency Po al - Use gene a ed map wi h a da ase o e lay o
an ibio ic consump ion. .............................................................................................................. 33
Figu e 26. Po uguese NHS T anspa ency Po al Ca alogue Da ase s' me ada a gene a ion
lowcha . .................................................................................................................................... 34
Figu e 27. Some o he Clinical Te minologies Cen e’s Ca alogues. ........................................... 35
Figu e 28. A chi ec u e o he me ada a low, wi h pa icula emphasis on he ole o he
Na ional Da ase s Ca alogue, om da a holde s o he Eu opean Da ase s Ca alogue. ............ 36
Figu e 29. Fi s de elopmen e sion o he Po uguese na ional da ase s ca alogue. .............. 47
Figu e 30. Example o a da ase eco d in he i s de elopmen e sion o he Po uguese
na ional da ase s ca alogue. ....................................................................................................... 48
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Lis o Tables
Table 1. Na ional da ase s compu a ional and s o age in as uc u e op ions. ............................ 8
Table 2. Main en i ies (Classes) ha make up he Heal hDCAT-AP s anda d [19]. ...................... 13
Table 3. Some p ope y di e ences be ween Heal hDCAT-AP and EUCAIMDCAT o he
"Da ase " class. DCAT-AP compa ison p o ided as baseline. ...................................................... 18
Table 4. Sample o 8 da ase s desc ibed wi h he Heal hDCAT-AP s anda d, o he nHDsC MVP.
..................................................................................................................................................... 44
Table 5. Heal hDCAT-AP Recommended P ope ies ha will be manda o y in he PT nHDsC
me ada a. .................................................................................................................................... 46
Table 6. Heal hyCloud WP3 ecommenda ions o uphold FAIR da a p inciples in Heal h Da a
ha a e ela ed wi h da ase s´ ca alogues. ................................................................................. 53
Table 7. Manda o y p ope ies o he main classes o he Heal hDCAT-AP S anda d ( o non-
public da a). Classes wi hou manda o y p ope ies a e ins ead hype linked o hei de ini ion
[19]. ............................................................................................................................................. 54
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Abb e ia ions and Ac onyms
CDM
Common Da a Model
CPAL
Po uguese Na ional Ca alogue o Clinical Analysis
CRUD
C ea e, Read, Upda e, Dele e
CSIRT
Compu e Secu i y Inciden Response Team
D
Deli e able
DAAMS
Da a Access Applica ion Managemen Sys em
DBC
Digi al Business Capabili y
DCAT
Da a Ca alogue
DCAT-AP
Da a Ca alogue Applica ion P o ile
DOI
Digi al Objec Iden i ie
EC
Eu opean Commission
EHDS
Eu opean Heal h Da a Space
EHDS2
Eu opean Heal h Da a Space o Seconda y Use
EU
Eu opean Union
EUCAIM
Eu opean Fede a ion o Cance Images
FAIR
Findable, Accessible, In e ope able, Reusable
FDP
FAIR Da a Poin
FHIR
Fas Heal hca e In e ope abili y Resou ces
GDPR
Gene al Da a P o ec ion Regula ion
HDAB
Heal h Da a Access Body
HDH
F ench Heal h Da a Hub
Heal hDCAT-AP
Heal h Da a Ca alogue Applica ion P o ile
HTTPS
Hype Tex T ans e P o ocol Secu e
ICPC
In e na ional Classi ica ion o P ima y Ca e
MVP
Minimum Viable P oduc
nHDsC
Na ional Heal h Da ase Ca alogue
NHS
Na ional Heal hca e Sys em
OMOP CDM
Obse a ional Medical Ou comes Pa ne ship Common Da a Model
PRR
Reco e y and Resilience Plan
RDF
Resou ce Desc ip ion F amewo k
SEMIC
Seman ic In e ope abili y Communi y
SIEM
Secu i y In o ma ion and E en Managemen
SIMSNS
NHS In o ma ion and Moni o ing Sys em
SPE
Secu e P ocessing En i onmen
SPMS
SPMS – Se iços Pa ilhados do Minis é io da Saúde, E.P.E. – Po ugal
(Sha ed Se ices o he Minis y o Heal h)
SSO/IAM
Single Sign-on/Iden i y Access Managemen
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2. Scope o his Deli e able
This deli e able aims o desc ibe he equi emen s and speci ica ions o he Po uguese
Na ional Da ase Ca alogue. Being unde he pu iew o Task 6.1 - na ional Heal h Da ase
Ca alogue (nHDsC): Analysis and design o Heal hDa a@PT, his documen includes an analysis
o he p e equisi es o he na ional heal h da ase s´ ca alogue, as well as sec ions on he use o
s uc u ed da a, in e na ional s anda ds, da ase de ini ions, me ada a equi emen s, da ase
sou ces (da a holde s), and co esponding a iables, as well as a ha monised echnical shee .
This equi emen s and speci ica ions will guide he de elopmen and implemen a ion o he
na ional da ase s ca alogue.
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3. Landscape analysis on equi emen s and speci ica ions
A landscape analysis was conduc ed o le e age he ecommenda ions issued by Eu opean
ini ia i es and he bes p ac ices de eloped bo h na ionally and in e na ionally o de elop he
equi emen s and speci ica ions o he nHDsC, which a e p esen in Sec ion 4.
This landscape analysis was di ided in o ou main pa s: he analysis o ele an
ecommenda ions o ca alogue cons uc ion p oduced by Eu opean ini ia i es, a deep-di e on
he Heal hDCAT-AP s anda d, an o e iew o ope a ional ca alogues om o he Membe S a es
and a b ie o e iew o he Po uguese con ex ega ding da a ca aloguing.
3.1. Ga he ed ecommenda ions om Eu opean ini ia i es
To in o m he speci ica ions and equi emen s o he Po uguese da ase s, ecommenda ions
om a ious Eu opean ini ia i es we e consul ed. A b ie o e iew on hese ini ia i es and on
hei ele an ou comes in he con ex o he cons uc ion o he p esen deli e able a e
p o ided nex .
3.1.1. TEHDAS
TEHDAS Join Ac ion issued ecommenda ions o he echnical implemen a ion o he EHDS2,
namely op ions o he implemen a ion o in o ma ion sys ems o manage he na ional me ada a
ca alogues [9]. Impo an ecommenda ions ega ding da ase s´ ca alogue we e de eloped
du ing his join ac ion, building he a ional o subsequen wo k, namely o he de elopmen
o he Heal hDa a@EU cen al se ices, o he de ini ion o he me ada a s anda d o use on
he EHDS2 da ase s´ ca alogue, o name a ew.
Likewise, ecommenda ions ega ding na ional da ase s in as uc u e op ions we e also
p o ided, as summa ized in Table 1.
Addi ionally, impo an conside a ions abou da a sa e y also esul ed om TEHDAS2, in
acco dance wi h he Da a Go e nance Ac : despi e he me ada a in o ma ion in he ca alogues
will no include pe sonal da a, he e should be su icien da a secu i y measu es in place o
p e en malicious ac s, such as sub e sion o links o edi ec o malicious websi es.
Quali y me ada a is key in a da ase ca alogue o inc ease da a indabili y and euse, and hus
he subjec o me ada a s anda ds and seman ic in e ope abili y was b oached in TEHDAS
guidelines. A Da a Ca alogue Applica ion P o ile (DCAT-AP) based sys em was ecommended due
o i s pu pose-buil design o suppo in e ope abili y be ween da a po als and ca alogues in
he public sec o . The c ea ion o an ex ension o his sys em, a Heal hDCAT-AP, designed o
add ess he speci ici y o heal h da a was ecommended. This s anda d was la e adop ed as he
me ada a s anda d o he EHDS, and will be explained in u he de ail in Sec ion 3.2.
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Table 1. Na ional da ase s compu a ional and s o age in as uc u e op ions.
In as uc u e
Solu ion
Obse a ions
Compu a ional
Se e (16 co es, 32GB RAM,
1TB backup)
Se e speci ica ions dependen on a ic,
solu ion needs o be scalable o i demand.
Cloud se e
Secu i y s anda ds o ou sou ced se e need o
comply wi h Secu e P ocessing En i onmen (SPE)
s anda ds.
S o age
Da a Lakes (Massi e and
cen alised eposi o y o aw
da a)
Size o he solu ion allows in eg a ion o he
ca alogue in o he da a lake.
Fede a ed a chi ec u e is possible.
Mo e complex and in as uc u ally demanding
han a Da a Wa ehouse.
Da a Wa ehouse (Long- e m
s o age solu ion o da a)
Less demanding han a Da a Lake, bu no mally
ins i u ion based.
Decen aliza ion equi es communica ion
be ween wa ehouses and HDAB o sa is y da a
que ies.
S ill equi es la ge-scale s o age solu ions.
Da a Ma s (Lowe -scale long-
e m s o age solu ion)
Designed o sa is y indi idual da a eques s o he
HDAB, p o iding long- e m s o age o eques ed
da a.
Highly decen alized.
Finally, i was also concluded ha o acili a e adop ion o he sys ems and s anda ds necessa y
o he unc ion o he EHDS2, i is necessa y o assu e da a expe s, be da a use s, holde s o
HDABs ha e hei aining and capaci y building needs me . The ole o a mul i-app oach s a egy
o educa ion, dissemina ion and aining o os e in o med, da a-awa e indi iduals wi h he
knowledge and skills o ind, in e p e and use da ase s o hei wo k was also highligh ed in
TEHDAS guidelines.
3.1.2. Heal hy Cloud
Heal hyCloud is a p ojec dedica ed o ou pu ing a ious ecommenda ions and speci ica ions
o dis ibu ed heal h esea ch ac oss Eu ope, complian wi h he EHDS egula ion. As pa o
ha wo k, WP3 has conduc ed a landscape analysis o Eu opean heal h da a collec ions a ailable
o esea ch pu poses, e alua ing hei FAIRness (Findable, Accessible, In e ope able, Reusable)
le els. Heal hyCloud ´s indings poin owa ds inadequacies wi hin he heal h da a sys ems,
cul u al ba ie s, ou da ed policies and inadequa e incen i es as some o he main de e en s o
he gene a ion and managemen o FAIR da a. [10]
The WP3 o his p ojec pe o med a landscape analysis o cap u e he Eu opean heal h da a
collec ions a ailable o esea ch pu poses, and o e alua e hei FAIRness le el, and de e mine
he easibili y o pe o m indi idual le el da a linkages. O e 300 da a collec ions belonging o
he Eu opean Heal h In o ma ion Po al (h ps://www.heal hin o ma ionpo al.eu) we e
su eyed, and hese su eys ound ha mos da a collec ions we e a he egional o na ional
le el, wi h a small pe cen age (app ox. 3%) o da a collec ions ha ing mul i-coun y o Eu opean
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Copy igh ©2025 Heal hDa a@PT. All igh s ese ed.
le el da a. O e 60% o hese collec ions ei he do no pe iodically upda e hei da a, o upda e
i annually, and less han 40% allow o linkage wi h o he da ase s. [11]
Fu he mo e, i was ound ha he applica ion o FAIR da a p inciples o me ada a was key o
sus ainable, e icien and anspa en esea ch, inc easing he amoun o in o ma ion abou
da ase s (me ada a) and acili a ing he disco e y and eques o ele an da ase s o esea ch
ac i i ies. In “Guidelines o s anda dise me ada a empla es and assessmen o FAIRness
ma u i y le els”, he Heal hyCloud p ojec issues ecommenda ions o each pa o he FAIR
p inciples [10] (Annex 1).
All o hese ecommenda ions we e conside ed in he equi emen s and speci ica ions o he
Po uguese da ase s ca alogue p esen ed in Sec ion 4.
3.1.3. EHDS2 Pilo
The Heal hDa a@EU EHDS2 Pilo p ojec (h ps://ehds2pilo .eu), led by he F ench Heal h Da a
Hub (HDH) was launched in July 2022 so as o acili a e he implemen a ion o he EHDS o he
seconda y use o da a (EHDS2). In i s wo-yea un ime, he p ojec pilo ed he EHDS2 by: i)
connec ing da a pla o ms in a ne wo k in as uc u e and de eloping se ices o suppo he
use jou ney o esea ch p ojec s using heal h da a om a ious EU Membe S a es, and ii)
p o iding guidelines o da a s anda ds, da a quali y, da a secu i y and da a ans e , suppo ing
he EHDS2 in as uc u e. To his aim, he p ojec b ough 17 Eu opean pa ne s oge he ,
ensu ing ep esen a ion o heal h da a access bodies, Eu opean agencies and heal h da a sha ing
in as uc u es.
One o he key ou pu s o his p ojec , c ucial o he implemen a ion o he na ional da ase
ca alogue and EU cen al ca alogue, is he de elopmen o a s anda d o me ada a in he
Heal hDa a@EU: Heal hDCAT-AP. This s anda d was designed as an ex ension o he Da a
Ca alogue (DCAT) me ada a s anda d and was pu pose-buil o he equi emen s o ( e)use o
da a in he EHDS. In Sec ion 3.2, he de ails o his s anda d will be elabo a ed on.
3.1.4. TEHDAS2 and Eu opean Commission’s documen s
Building on he ecommenda ions issued by TEHDAS and by he g oundwo k made in he EHDS2
Pilo p ojec , TEHDAS2 p o ided speci ica ions and equi emen s o implemen ing and
main aining a na ional me ada a ca alogue o da ase s [2,3] and guidance on how da a should
be desc ibed using Heal hDCAT-AP as common me ada a model [12]. These will guide he
o hcoming implemen ing ac s on da ase s ca alogues, and we e he e o e ully conside ed o
he ou lining o he equi emen s and speci ica ions o he Po uguese da ase s ca alogue.
On u he , a comp ehensi e equi emen s and speci ica ion ca alogue o scale-up documen
se ing ou he Eu opean Commission’s s a egic ision o he digi al business capabili ies
essen ial o he implemen a ion o Heal hDa a@EU, was o icially published and endo sed by DG
SANTE in Decembe 2024. [13] This documen aimed o o assis Membe S a es in he execu ion
o hei HDAB implemen a ion ac i i ies. This documen p esen s a de ailed and s uc u ed
compila ion o sys em equi emen s ac oss a ious domains, accompanied by pe inen
e e ences o he applicable egula o y amewo ks.
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Copy igh ©2025 Heal hDa a@PT. All igh s ese ed.
The i s module o his documen , “Da ase Ca alogues Requi emen s”, is s uc u ed in o h ee
co e componen s: Da ase C ea ion, Da ase Publica ion and Upda e, and Da ase Sea ch
Func ionali y. The analysis o his module played a key ole in he de elopmen o Sec ion 4 o
he p esen epo .
3.2. The Eu opean S anda d o me ada a: Heal hDCAT-AP
Heal hDCAT-AP was decided as he me ada a s anda d o he EHDS a la ge, and as such i s co e
(DCAT), and how Heal hDCAT-AP expands upon his ounda ion will be discussed. DCAT is a
Resou ce Desc ip ion F amewo k (RDF) ocabula y designed speci ically o da ase desc ip ion,
acili a ing in e ope abili y be ween ca alogues and decen alized publishing o da ase s. Fi s
s anda dized in 2014, DCAT inco po a es e ms om p e-exis ing ocabula ies whene e hei
de ini ions we e conside ed “s able”, u he b oadening i s compa ibili y.
As a da a model, RDF allows one o exp ess in o ma ion abou “ esou ces”, an abs ac e m ha
can e e o any hing om places, o people, o objec s, o concep s, e c. I p o ides his
in o ma ion in a machine- eadable way, o acili a e eading by applica ions and
in e connec i i y. One o he key ea u es o his da a model is he u iliza ion o seman ic iples
o cons uc s a emen s on esou ces. These iples ollow a “subjec , p edica e, objec ”
s uc u e, any one o hese posi ions can be ied o an in e na ional esou ce iden i ie such as a
Uni o m Resou ce Loca o (URL). A ocabula y, such as DCAT, can hen be associa ed o his da a
model o p o ide seman ic con ex o each “ esou ce”. [14,15]
Figu e 3. Rep esen a ion on how he di e en s anda ds expand on each o he : RDF wo king as he co e
ounda ion o he DCAT s anda d, u he ex ensions inc ease hei speci ici y.
The DCAT Applica ion P o ile (DCAT-AP) is an ex ension o DCAT, specialized o add ess ca alogue
in o ma ion sha ing in Eu ope. Called P o iles o Applica ion P o iles, ex ensions like DCAT-AP
add cons ain s o he base DCAT ocabula y, be i he addi ion o manda o y classes and
p ope ies, de ini ion o a minimum se o me ada a ields, and so o h. DCAT-AP seeks o
inc ease me ada a a ailabili y and euse by s anda dizing me ada a ag eemen s o sha ing
da ase desc ip ions be ween da a po als. A key ea u e o his s anda d is i s expandabili y, and
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ex ensions ha e been c ea ed o add ess speci ic me ada a needs, such as GeoDCAT-AP o
geospa ial da a, S a DCAT o s a is ical da a, and Heal hDCAT-AP o heal h da a. [16,17]
C ea ing such p o iles en ails complying wi h ce ain equi emen s, acco ding o he Seman ic
In e ope abili y Communi y (SEMIC)[18]:
• Respec he minimum con o mance equi emen s as de ined in sec ion 4 o he
speci ica ion o DCAT-AP 3;
• Ex ensions mus no widen bu may only na ow down he usage;
• Ex ensions may add classes and p ope ies ha a e no speci ied o and a e no simila
o exis ing DCAT-AP classes;
• Manda o y p ope ies mus emain manda o y: Recommended and Op ional p ope ies
may be e-classi ied o emo ed;
• Ex ensions mus include all he DCAT-AP manda o y con olled ocabula ies p esen in
Sec ion 10.2 o DCAT-AP 3;
• Ex ensions may add manda o y con olled ocabula ies.
Wi h hese equi emen s, one can see how a ca alogue complian wi h DCAT-AP would be
complian wi h DCAT, bu he e e se is no necessa ily ue. I is hen use ul o hink abou DCAT-
AP as a e inemen o DCAT ha conside s documen a ion classes, p ope ies and o he
equi emen s ha a e ocused on me ada a a ailabili y and euse. F om he sec ion on DCAT-
AP’s scope, he e a e some o he aspec s conside ed essen ial, and as such, a e conside ed in
his p o ile [17]:
• Unde s anding he da a o se ice s uc u e, and how o ge access o he da a;
• In o ma ion on scope o pu pose o he da a;
• Legal in o ma ion;
• Knowledge on da a publishe s, and any o he agen s in ol ed;
• Knowledge o da a a ailabili y and change policies.
A e building up he unde s anding on how hese p o iles build upon he DCAT ocabula y, now
ollows an explo a ion on Heal hDCAT-AP as an ex ension o DCAT, he p oblems i ies o ackle,
and he essen ial aspec s o his p o ile.
DCAT-AP was chosen as he s anda d o enhance seman ic in e ope abili y wi hin he o e all
Eu opean da aspace and de ined as he baseline speci ica ion o me ada a eco ds in he
Eu opean Union. As an ex ension o DCAT-AP, Heal hDCAT-AP eu ilizes i s main classes
(Ca alogue, Da ase , Dis ibu ion, e c.), bu u he e ines he model o deal speci ically wi h
ca aloguing elec onic heal h da a. One o he s andou ea u es o his ocabula y is he
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u iliza ion o iples o allow o me ada a en ichmen wi hou comp omising es ablished
s uc u es [19]. Heal hDCAT-AP has had i s i s p oposal published in Decembe o 2023, as a
esponse o he p oposal o a egula ion on he Eu opean Heal h Da a Space, and he
subsequen need o de elop an RDF ocabula y eady o accommoda e he unique equi emen s
o me ada a abou elec onic heal h da a.
Heal hDCAT-AP was designed om he g ound-up o di ec ly ackle he b oad scope o EHDS: o
example, he inclusion o wellness da a om heal h acking applica ions, o s a is ically and
policymaking ele an da a such as popula ion-wide heal h egis ies come in o play in he EHDS,
and as such equi e a iable me ada a app oach [12].
A Gi Hub o his s anda d was deployed, con aining a isual ep esen a ion o he main classes
and hei main suppo ing classes, whe ein one can see he new and upda ed p ope ies (in
g een), and he DCAT-AP p ope ies u ilized as is (in ed), as p esen in he exce p o he
manda o y p ope ies o he “Da ase ” class in Figu e 4.
Figu e 4. Heal hDCAT-AP manda o y p ope ies o he "Da ase " class. Exce p om o iginal in [19].
The p ope ies wi h he “heal hdca ap” a ix a e no el addi ions, and co e impo an
in o ma ion, such as he HDAB suppo ing he access o da a, popula ion co e age as a
measu emen o ep esen a i i y, age anges o acili a e sea ch, numbe o eco ds as a
measu emen o da ase size, o name a ew. These p ope ies a e ele an conside ing ha he
heal h da a in hese da ase s is mean o be a chi ed and sea ched o in ca alogues, so c ea ing
manda o y p ope ies ha can be esea ch- ele an is key o high quali y me ada a and o align
wi h FAIR p inciples. Table 2 con ains he main en i ies (Classes) ha comp ise he Heal hDCAT-
AP s anda d, wi h sho desc ip ions and hype link o hei sou ce. In Annex 2, he manda o y
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p ope ies ha popula e hese classes ( o non-public da a, he main da a ype managed by
SPMS) a e shown in ull.
Table 2. Main en i ies (Classes) ha make up he Heal hDCAT-AP s anda d [19].
Class
Desc ip ion
Agen
Class o objec s ha pe o m ac ions ega ding he “Co e” en i ies (link)
Ca alogue
A eposi o y ha s o es Da ase s and supplies o he da a se ices. (link)
Ca alogue Reco d
A eco d o a Da ase ’s en y in he Ca alogue (link)
Ca alogued Resou ce
Resou ce ca alogued by an agen . (link)
Concep
A “uni o hough ” ha is he subjec o a Ca alogue, Da ase o Se ice (link)
Da ase
Rep esen s in o ma ion published o cu a ed by an agen (link)
Dis ibu ion
How he da ase is made a ailable: i s mani es a ion (link)
Loca ion
Geog aphical posi ion, a named place (link)
Rela ionship
Class ha de ines he connec ion be ween DCAT Classes (link)
Righ s S a emen
A decla a ion o he in ellec ual p ope y igh s (IPR) associa ed wi h o o e a
esou ce, an o icial legal documen g an ing au ho isa ion o use he esou ce,
o an in o ma ion ega ding access igh s. (link)
The addi ions and changes o DCAT-AP made in Heal hDCAT-AP can be u he amed by he
EHDS legisla ion, whe e, acco ding o A icle 51: “Da a holde s shall make he ollowing
ca ego ies o elec onic da a a ailable o seconda y use (…):
• (a) elec onic heal h da a om EHRs;
• (b) da a on ac o s impac ing on heal h, including socioeconomic, en i onmen al and
beha iou al de e minan s o heal h;
• (c) agg ega ed da a on heal hca e needs, esou ces alloca ed o heal hca e, he
p o ision o and access o heal hca e, heal hca e expendi u e and inancing;
• (d) da a on pa hogens ha impac human heal h;
• (e) heal hca e- ela ed adminis a i e da a, including on dispensa ions, eimbu semen
claims and eimbu semen s;
• ( ) human gene ic, epigenomic and genomic da a;
• (g) o he human molecula da a such as p o eomic, ansc ip omic, me abolomic,
lipidomic and o he omic da a;
• (h) pe sonal elec onic heal h da a au oma ically gene a ed h ough medical de ices;
• (i) da a om wellness applica ions;
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• (j) da a on p o essional s a us, and on he specialisa ion and ins i u ion o heal h
p o essionals in ol ed in he ea men o a na u al pe son;
• (k) da a om popula ion-based heal h da a egis ies such as public heal h egis ies
• (l) da a om medical egis ies and mo ali y egis ies;
• (m) da a om clinical ials, clinical s udies, clinical in es iga ions and pe o mance
s udies subjec o Regula ion (EU) No 536/2014, Regula ion (EU) 2024/1938 o he
Eu opean Pa liamen and o he Council(35), Regula ion (EU) 2017/745 and Regula ion
(EU) 2017/746;
• (n) o he heal h da a om medical de ices;
• (o) da a om egis ies o medicinal p oduc s and medical de ices;
• (p) da a om esea ch coho s, ques ionnai es and su eys ela ed o heal h, a e he
i s publica ion o he ela ed esul s;
• (q) heal h da a om biobanks and associa ed da abases.
This legal ex lea es plen y o oom o in e p e a ion. One o he key challenges iden i ied by
TEHDAS2 du ing hei exe cise in cla i ying hese ca ego ies o ob ain clea , ull- ex de ini ions,
examples and guidelines o map heal h da a o hese ca ego ies was p ecisely he non- i iali y
o his mapping. Indeed, making he as weal h o uns uc u ed heal h da a comply wi h FAIR
p inciples equi es no only a p ocessing o ha da a o make i i o seconda y use, bu also a
pa adigm shi in how app oach da a p oduc ion, o ganiza ion and cu a ion [12].
Besides his e o in classi ica ion and cla i ica ion o hese ca ego ies made in TEHDAS2, he
EHDS2 Pilo has de eloped a Sandbox as an example o he Heal hDCAT-AP ex ension in ac ion
o a ca alogue (Figu e 5), con aining he abili y o sea ch di e en da ase s om he p ojec
conso ium, al hough no ea u ing any o he obus sea ch capabili ies seen in he EUCAIM
ca alogue (Figu e 1).
15
D6.1 Na ional da ase ca alogue equi emen s and speci ica ions
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Copy igh ©2025 Heal hDa a@PT. All igh s ese ed.
Figu e 5. Example o a da ase in he EHDS2 Pilo Sandbox. In column a he le , he i s ec angle
ep esen s he cu en DCAT-AP p ope y ype (M - Manda o y, R-Recommended, O-Op ional) when
applicable, and he second ec angle ep esen s he Heal hDCAT-AP p ope y ype.
The p elimina y e sion o his sandbox (Figu e 5) p esen ed an exhaus i e lis on he p ope ies
allowing a compa ison wi h he DCAT-AP s anda d di ec ly (in he ec angles a he le o each
p ope y). Ho e ing o e he second ec angle, which ea u es he ini ial o he p ope y
(Op ional, Recommended, Manda o y) and an a ow signi ying whe he he p ope y had been
mo ed up in demand, a ool ip will appea o jus i y he p ope y’s posi ion on he Op ional o
Manda o y scale.
Recen ly, a Heal hDCAT-AP edi o and alida o (Figu e 6) we e p o ided o be e guide da a
holde s when using his s anda d o hei me ada a desc ip ions.
22
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Figu e 11. Example o he sub- egis e compa ison ool o empo al co e age in he Swedish ca alogue.
Th ee sub- egis e s we e selec ed, wi h empo al co e age o e lap exis ing only be ween wo o hem.
Consequen ly, a message is displayed o he use indica ing ha no con empo a y da a is a ailable.
Me ada a ool desc ip ion
Ano he ea u e o he Swedish ca alogue is he Me ada a Tool. The me ada a ool p o ides a
s uc u ed o e iew o he da a a ailable in Swedish egis e s and biobank sample collec ions.
The con en o he egis e s is desc ibed using s anda dized, de ailed me ada a, allowing o
ad anced sea ches and compa isons amongs he a ious a iables. This ool includes
in o ma ion on he signi icance and alue anges o egis e a iables, among o he de ails,
enabling esea che s o assess whe he he a iables mee hei needs. Thus, he me ada a ool
acili a es he iden i ica ion and e alua ion o egis e s and a iables ele an o he use .
Mo eo e , his ool allows he c ea ion o cus omized lis s o a iables om a ious sub- egis e s,
o e ing use s a di ec way o compa e only he a iables o in e es .
Access o he me ada a ool equi es use s o possess an accoun om he Swedish Resea ch
Council. The se ice is ee o cha ge bu equi es he email add ess o be a ilia ed wi h a
esea ch p o ide , au ho i y, o egis e -main aining o ganiza ion.
The e is also a use manual a ailable o his ool, in Swedish (Link), o acili a e i s use.
3.3.2. No wegian ca alogue
No wegian’s me ada a ca alogue is a ailable he e. The ca alogue is a ailable in wo languages:
No wegian and English.
The homepage o he ca alogue is s a egically di ided in o wo sec ions. The i s sec ion is
dedica ed o enabling use s o explo e da ase s, while he second acili a es eques s o da a
(Figu e 12).
23
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Figu e 12. Fi s page o he No wegian ca alogue, di ided in o wo sec ions ea u ing ools o explo ing
da a sou ces (a) and da a access guidelines (b).
Upon selec ing he "Da a Sou ces" op ion (Figu e 12), use s a e di ec ed o an o e iew page
showcasing a ious ypes o da a sou ces, including heal h eco ds, medical quali y egis ies,
biobanks, s a is ics, among o he . This page ea u es a ee- ex sea ch o e m-based loca ion
o ele an da a sou ces, supplemen ed by ou key il e s:
1. Type o Da a Le el: Iden i ying whe he da ase s a e open access o equi e applica ion-
based access.
2. Type o Da a Sou ces: Di e en ia ing among na ional medical quali y egis ies, na ional
heal h egis ies, s udies, s a is ics, e c.
3. Ca ego ies: Enabling selec ion based on speci ic ca ego ies, such as he medical
condi ions (e.g. au oimmune diseases, cance , and o he s), body sys ems (e.g.
gas oin es inal sys em, espi a o y sys em, musculoskele al sys em), socio-economic
da a, e c.
4. Da a holde : Fil e ing by ins i u ions esponsible o managing and main aining he
da ase s.
Once he il e s a e applied, he lis o da a sou ces on he igh is e ined acco dingly. In hese
esul s´ lis , each esul is accompanied by a b ie desc ip ion, name o he da a holde and
da ase ´s empo al co e age. Use s can click di ec ly on he en ies in he esul s´ lis o ob ain
mo e de ailed in o ma ion.
Wi hin each da a sou ce speci ic page (upon selec ion), clickable links ha di ec au oma ically
he use o speci ic sec ions a e p o ided. In his page, in o ma ion abou he con en o he
egis y, da ase s a iables, and da a quali y a e p o ided, along wi h in o ma ion ela ed o he
p ocess o applying o da a access. In he a iables sec ion, he e is a clickable bu on ha allows
he c ea ion o a iables lis s and access o de ailed me ada a. In he da a quali y sec ion,
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in o ma ion on da a quali y indica o s, such as comple eness, alidi y, compa abili y, imeliness,
and eliabili y a e p o ided (Figu e 13).
Figu e 13. Example o he page layou o a da ase in he No wegian ca alogue.
A pa icula ly use ul ea u e is he a iable sea ch unc ion, ha allows use s o sea ch ia ee
ex o based on il e ´s applica ion (e.g. he da a sou ce, a iable g oup, e c.) (Figu e 14).
Figu e 14. Example o he a iable sea ch page, enabling sea ch using ee ex o applying di e en il e s
(p esen ed on he le ). The middle ab is au oma ically upda ed acco ding o he chosen il e ing ype and
p o ides mo e in o ma ion abou he selec ed i ems. On he igh , he lis o a iables, e ined acco ding
o he applied il e s.
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Fo example, when selec ing a speci ic da a sou ce, use s can explo e he ela ed da a
collec ions. Each collec ion p o ides u he in o ma ion, such as i le, desc ip ion, da a sou ce,
and o he ele an in o ma ion. The e is also de ailed con en and quali y in o ma ion, including
inclusion/exclusion c i e ia, geog aphic co e age, comple eness and how i ’s measu ed, and
o e all da a co e age. Legal and adminis a i e de ails a e also a ailable, including links o
ele an legisla ion and egula ions, iden i ica ion o he da a con olle and p ocesso , and he
le el o pe sonal iden i ica ion in ol ed. Each da a collec ion page includes adminis a i e
me ada a, such as s a is ical ype, coun ing uni , and a URL.
Wi hin da a collec ion, use s can also explo e a iable g oups (Figu e 15), which include i les,
desc ip ions, and me ada a upda e da es.
Figu e 15. An example o a a iable when sea ching o 'diabe es,' when a da a sou ce and a da a collec ion
has been chosen. A a iable g oup is selec ed (bu no ye ma ked) which expands he in o ma ion in he
ab designa ed o his pu pose. The lis o a iables co esponding o he selec ed il e ing is e ined
acco dingly.
The a iable lis upda es au oma ically as sea ch c i e ia a e e ined, and use s can download he
inal selec ion in CSV o ma . The downloaded ile includes comp ehensi e me ada a o each
a iable, such as: URL, Va iable ID, Va iable Name (in bo h o iginal language and English), Da a
Sou ce, Classi ica ion O de , Da a Collec ion, Desc ip ions (o iginal and English), Da abase
Re e ence, Da a Type, Mas e Code, Desi ed Da a, Measu e Type, Uni o Measu e, Deg ee o
Iden i ica ion and empo al co e age.
Fo each a iable, addi ional de ails a e a ailable, including alues and ca ego ies, and mo e
speci ic in o ma ion such as i le, desc ip ion, o igin, con en and quali y (including no es on da a
quali y, ype, and leng h), and adminis a i e codes and da abase e e ences.
Use s also ha e he op ion o log in and sa e selec ed a iables o a pe sonalized lis . Addi ionally,
each a iable can be sha ed ia a di ec link o sen by email.
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3.3.3. Finnish (Finda a) ca alogue
Finda a's me ada a ca alogue is a ailable he e. The ca alogue is a ailable in h ee languages:
Finnish, Swedish and English.
The homepage o his ca alogue is designed wi h use -cen ic unc ionali ies, comp ising wo
dis inc sec ions. The i s sec ion highligh s he mos ecen da a esou ces, ensu ing immedia e
isibili y o upda ed da ase s. The second sec ion ocuses on a iable sea ch, allowing use s o
pe o m que ies based on name, desc ip ion, o keywo ds.
Fo example, a sea ch o "smoking" di ec ly na iga es use s o he a iable sea ch page, whe e
mo e han 100 a iables associa ed wi h he concep a e displayed, including immedia e isibili y
o hei co esponding da ase s (Figu e 16). Fu he mo e, use s can sea ch di ec ly o da ase s
(Figu e 17). By le e aging o ganiza ional il e s o using he sea ch ba — o example, que ying
"cance "—use s a e edi ec ed o he o ganiza ion holding he que ied da ase (in he case o
que ying o cance da a esou ce, o he Finnish Cance Regis y, Figu e 17). When accessing
he page o he egis y, he use is p o ided wi h comp ehensi e in o ma ion, namely on he
con en o he egis y, i s da a sou ces, egional and empo al co e age, keywo ds, and on he
a ailable da ase s wi hin he egis y.
Figu e 16. Example o a sea ch o "smoking" in he que y o a iables wi hin he Finnish na ional
ca alogue.
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Figu e 17. Example o a sea ch o da a esou ces in he Finnish ca alogue.
Fo example, he Finnish Cance Regis y, con ains ou da ase s, each wi h a isible coun o
a iables, as can be consul ed in i s page in he Finda a´s ca alogue (Figu e 18). Use s can
seamlessly click on he da ase o g ea es in e es , being edi ec ed o he da ase -speci ic page
whe e in o ma ion on da ase ´s popula ional co e age, obse a ion uni ype, da ase ´s li ecycle
phase, and a iables can be ound.
Figu e 18. Example o he page layou o he da a sou ce “Finish Cance Regis y”.
Rega ding he sec ion wi h in o ma ion on he a iables, he ein a iables a e ca ego ized in o
h ee g oups:
1. Basic Va iables: Such as ID, gende , and diagnosis da e, which a e accessible wi hou
es ic ion.
2. Pe mission-Requi ed Va iables: Including bi h da e, ollow-up de ails, and pa ien
s a us.
3. Ad anced Va iables: Requi ing speci ic condi ions o access.
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Wi hin a iables sec ion i is possible o download he in o ma ion on he a iables in a CSV ile
(Figu e 19). Likewise, each a iable includes a clickable link ha p o ides de ailed me ada a on
he a iable, such as desc ip ion, and a iable da a ype (e.g. in ege ) and obse a ion uni ype
(e.g. pe son).
Figu e 19. Example o a page layou o a da ase om he Cance Regis y in he Finnish na ional
ca alogue, highligh ing he op ion o download a iables in CSV o ma .
The possibili y o download he CSV ile, lis ing he a iables and hei ea u es, al hough no
desc ibed in Finda a´s page as such, o e s an in e es possibili y o use s o indica e he
a iables o in e es in a da ase ( o example, by edi ing he CSV ile lea ing only he in ended
a iables, and submi ing his ile in he da a access applica ion o m), acili a ing he subsequen
eques o da a access. Such possibili y will be explo ed while deploying he Po uguese
ca alogue.
No ably, he Finnish ca alogue ope a es sepa a ely om he po al used o submi ing da a
access eques s.
3.3.4. F ench ca alogue
The F ench Heal h Da a Hub is esponsible o de eloping he F ench me ada a ca alogue, as
pa o hei e o o become he na ional HDAB. To his end, in 2024 hey published he i s
Deli e able o his ask, con aining he echnical a chi ec u e de ini ion o his digi al business
capabili y. This documen con ains he desc ip ion o hei echnical solu ions o de elop a
se ice ha is EHDS complian , capable o smoo hly connec ing o he Eu opean ca alogue while
also mee ing he na ional seconda y use o heal h da a needs. [21]
Ca alogue in as uc u e and me a-da a s anda ds
Acco ding o he F ench Heal h Da a Hub Deli e able 5.1 “nHDsC: Requi emen s/Speci ica ions”
[21], he F ench me ada a ca alogue es s on i e main guiding p inciples:
• Whi e-label solu ion: a gene ic so wa e solu ion ha can be eu ilized and eb anded
by o he ins i u ions wi hou e ealing he unde lying Heal h Da a Hub´s de ails;
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• Role managemen : capabili y o assign and manage di e en adminis a i e oles o
access con ol and go e nance;
• Compliance wi h s anda ds: ollow he Heal hDCAT-AP me ada a o ma , o
in e ope abili y wi h Eu opean and in e na ional me ada a s anda ds;
• Scalable me ada a managemen : uploading and managemen o me ada a a he
ca alogue, da ase and da abase le els;
• Pe sonaliza ion: an ex ension o he whi e-label solu ion p inciple, he solu ion will be
able o be pe sonalized by o he ins i u ions o i hei own b and iden i ies.
Rega ding he echnical a chi ec u e o his DBC, i is di ided in o ou componen s: on -o ice,
back-o ice, da abase, and use managemen , all o hem Docke ized. Bo h he on -o ice and
back-o ice ha e a Reac webapp on -end, wi h a Py hon based back-end (Fas API). Meanwhile,
he da abase was buil wi h he open-sou ce solu ion Fuseki (Apache), chosen o i s suppo o
RDF da a (key o Heal hDCAT-AP compa ibili y, which is an RDF ocabula y). I also allows o
que ying ia SPARQL, he abili y o que y he da abase being a key unc ionali y o he me ada a
ca alogue. Finally, use managemen uses Keycloak, an open-sou ce solu ion like Fuseki, o
c ea e a Single Sign-On/Iden i y Access Managemen (SSO/IAM) sys em in a GDPR-complian
way.
To synch onize wi h na ional ca alogues, i is planned o employ a solu ion ha makes he local
me ada a ca alogues a ailable h ough HTTPS (Hype Tex T ans e P o ocol Secu e) and he
ins i u ion’s own SSO o he whi e-label solu ion. The whi e-label solu ion will possess ools o
pulling (allowing o i s da a o be e ie ed o synch oniza ion) and pushing (using he add ess
o a a ge ca alogue – such as he HDAB’s – o send he da a o synch oniza ion au oma ically)
he da a (in his case, me ada a). The wo k low is ep esen ed in Figu e 20.
Figu e 20. Me ada a wo k low o me ada a synch oniza ion be ween na ional ca alogues and he nHDsC.
Synch oniza ion wi h he Eu opean ca alogue is planned o in ol e a simila echnology,
implemen ed ia a C oss Bo de Engine, pushing he da a o he heal h da a dispa che which is
esponsible o communica ion wi h he c oss-bo de ga eway, he componen o b idging
connec ion wi h he Heal hDa a@EU cen al se ices ca alogue.
Examples om he F ench Ca alogue
F ance cu en ly has a Da a Ca alogue (h ps://www.heal h-da a-hub. /ca alog-de-donnees )
ha co e s da ase s om Na ional Heal h Da a Sys em (SNDS), encompassing hospi al da a,
RDF Local O g nHDsC
Fo ma alida ion
API Push
HTTPS/SSO
Fo ma alida ion
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heal h insu ance da a and o he sou ces di ec ly ela ed wi h he F ench NHS. Examples o hei
da a ca alogue can be seen in Figu es 21 and 22.
Figu e 21. F ench Da a Ca alogue sea ch unc ions. Exis ing il e s a e "medical domain" and "da a
ca ego y".
As can be seen in Figu e 21, he sea ch unc ionali ies o he F ench da a ca alogue a e ailo ed
o he limi ed en ies: ee- ex sea ch and il e ing by medical domain and da a ca ego y a e
mean o lead he use owa ds a da abase, no speci ic da ase s. Despi e his, a lo o impo an
ields in o he Heal hDCAT-AP s anda d. In o ma ion ega ding he p o enance, da a con olle ,
empo al and geog aphical co e age, egula o y amewo k, da a e en ion pe iod and mo e a e
p esen when consul ing he egis y o each da abase in he da a ca alogue. The hos websi e
also allows o da a use s o submi hei da a access eques s.
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Figu e 22. F ench Da a Ca alogue, example o a da ase egis y. In o ma ion includes da a con olle and
scien i ic manage , popula ion o in e es , da ase size, empo al co e age, p o enance, da abase
documen a ion, e c.
As such, i is possible o see whe e Heal h Da a Hub, as one o he membe s o he EHDS2 Pilo
conso ium, s a ed conside ing he necessa y aspec s o a da ase s ca alogue, and he me ada a
s anda ds equi ed o such an in as uc u e o unc ion.
3.4. Fai Da a Poin s
In each Membe S a e, he na ional da ase s ca alogue o he na ional HDAB will expose and
agg ega e in a unique ca alogue me ada a o he da ase s a ailable o seconda y use pu poses
in ha Membe S a e. [3]
Fo his pu pose, each da a holde will publish and expose me ada a o he da ase s owned ia
FAIR Da a Poin s (FDPs), which a e in e ope able se ices aligned wi h FAIR p inciples (Findable,
Accessible, In e ope able, Reusable). A FDP is a REST API o c ea ing, s o ing, and se ing
me ada a wi h a cus omizable me ada a eposi o y. FDPs p o ide a uni o m me hod o
publishing me ada a abou da ase s, ca alogues, and hei dis ibu ions. This echnology
add esses key equi emen s o me ada a selec ion and exposu e o ensu ing ha me ada a is
bo h machine and human eadable. Re e se P oxy, FAIR Da a Poin Clien , FAIR Da a Poin Se e ,
and a T iple S o e/MongoDB o me ada a and use da a, espec i ely, a e commonly ound in
an FDP's a chi ec u e. [22,23]
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au ho ized ins i u ional ep esen a i es may con ibu e o upda e da ase in o ma ion.
The echnical speci ica ions o his au hen ica ion amewo k a e s ill unde
de elopmen and a e expec ed o inco po a e wo independen e i ica ion me hods.
Du ing he ini ial phase o p ojec execu ion, he ole o he da a holde will be
p o isionally assumed by he ca alogue manage . This indi idual will ac as an
in e media y, esponsible o acili a ing he submission o me ada a on behal o
ex e nal da a-p o iding en i ies. In subsequen phases, his esponsibili y will be
ans e ed o he da a holde s hemsel es; howe e , all submi ed da ase s me ada a
will be subjec o in e nal alida ion p io o publica ion, o ensu e ha da ase
desc ip ion include he minimum elemen s equi ed.
• Fo secu i y and compliance pu poses, he ca alogue will no be di ec ly connec ed o
any da a s o age sys ems. Likewise, i will ne e expose ac ual da a o allow any
desc ip ion ha could lead o he e-iden i ica ion o indi iduals. All da ase samples
(Heal hDCAT-AP manda o y p ope y o non-public da a) o be p o ided o non-public
da a will be based on syn he ic da a. The ollowing dedica ed secu i y mechanism will
be in place o assess he sa e y o syn he ic da ase gene a ion:
o Pe o m e-iden i ica ion es s;
o Syn he ic da a will no be gene a ed wi h high le el o de ail.
• In ca alogue’s de elopmen , ampe -p oo links and immu able publica ion con ols
will be implemen ed. To ensu e his, he ollowing secu i y measu es will be embedded
by design:
o Con igu e he Con en Secu i y Policy (CSP);
o Con igu e he HTTP Heade s.
These secu i y measu es mus ensu e ha once con en is published, i canno be
al e ed by gene al use s. These sa egua ds ensu e ha no public elemen o he
ca alogue can be edi ec ed, modi ied o exploi ed o malicious pu poses.
• O he secu i y measu es will be included, such as:
o Applying s ic access con ol p ocesses, ha implemen bo h he concep o
seg ega ion o du ies and p inciple o leas p i ilege;
o All secu i y e en s (Au hen ica ion, Au ho iza ion, e c) will be logged and s o ed
o compliance and o ensic analysis.
Logs gene a ed will be in eg a ed in a Secu i y In o ma ion and E en Managemen
(SIEM), o p oac i ely iden i y suspicious e en s ha may be cybe secu i y inciden s. In
case o any suspicious e en s, hese will be communica ed o he Compu e Secu i y
Inciden Response Team (CSIRT) h ough his email add ess: [email p o ec ed]in-saude.p .
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4.2. Da ase s desc ip ion – Heal hDCAT-AP s anda d and a iables
• Each da ase desc ip ion will be assigned a unique iden i ie and include he minimum
elemen s speci ied in he Heal hDCAT-AP s anda d (Annex 2). These desc ip ions will be
made indable and disco e able, and will be pe sis en ly s o ed, e sioned, and
main ained o ensu e accu acy, comple eness, and compliance wi h EHDS equi emen s.
• All me ada a will ollow he Heal hDCAT-AP s anda d, adhe ing o he s anda d’s
manda o y p ope ies (Annex 2), as well as making manda o y any o he p ope ies
deemed necessa y o ackle he na ional heal h da a euse needs. Each da ase
desc ip ion encompasses a leas he minimum elemen s ha heal h da a holde s a e
equi ed o p o ide o each da ase , along wi h he de ailed cha ac e is ics o hose
elemen s.
o To ha end, he ca alogue will acili a e he c ea ion o me ada a eco ds
ollowing he Heal hDCAT-AP s anda d, ia access o app op ia e ools.
• A da a quali y and u ili y label will be included in acco dance wi h EHDS egula ion.
o This label will appea as manda o y me ada a o all da ase s c ea ed wi h public
and/o Eu opean unding
• Va iables will be included in he o m o a da a dic iona y, ollowing he Heal hDCAT-AP
P ope y “Sample Dis ibu ion”.
o This a iable lis will eed he “Pe sonal Da a” P ope y.
o The da a dic iona y will also be p esen ed in an easy o isualize o ma (i.e. an
expandable box whe e he da a applican can click o isualise all da ase
a iables lis ed)
• The na ionally published da ase desc ip ions will be synch onized wi h he EU da ase
ca alogue ia na ional con ac poin .
4.3. Da ase s c ea ion, main enance, s o age, e iew and audi abili y
• The ca alogue will allow o he c ea ion, eading, upda ing and dele ion (CRUD) o
da ase desc ip ions in a s anda dised and machine- eadable o ma , Heal hDCAT-AP.
o The da ase desc ip ions p esen in he na ional ca alogue will be upda ed
yea ly a minimum.
o The upda e equency o he op -ou in o ma ion will align wi h ha o he
emaining me ada a. The ca alogue will include a disclaime in o ming ha due
o op -ou mechanisms, he da ase me ada a a he ime o da a access
applica ion/da a eques may be sligh ly di e en .
o An au oma ed solu ion mus de ec whene e al e a ions in he na ional
ca alogue (c ea ion, upda e, dele ion, es o e) occu , owa ds synch oniza ion
wi h he EU da ase ca alogue.
• The ca alogue will ensu e he pe sis en s o age o da ase desc ip ions.
• A mechanism will be in place o he alida ion o da ase desc ip ions h ough he use
o app op ia e ools such as he Heal hDCAT-AP Edi o .
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• The ca alogue will include e sioning ools, so ha al e a ions o he me ada a can be
aced, o audi abili y and oubleshoo ing.
o All audi s will be logged, o aceabili y and accoun abili y, using he Red Ha
Ad anced Clus e Secu i y o Kube ne es.
4.4. Ca alogue Backend
• In he backend, ela ional ables associa ed wi h each da ase will be main ained
(excluding he ac ual da a con en ) and will be accessible oge he wi h ele an
documen a ion o au ho ized and adequa ely au hen ica ed ca alogue (HDAB) s a . This
suppo ing in o ma ion s o ed in he ca alogue backend includes documen a ion
ela ed o da a quali y and u ili y labels, in acco dance wi h he QUANTUM amewo k,
and me ada a on he loca ion o he sou ce da a o build he da ase . A s anda dized
me hodology o da ase able cons uc ion will be adop ed, o ensu e consis ency,
p omo e aceabili y, and acili a e in e ope abili y be ween sys ems and se ices.
• Addi ionally, he backend will include a managemen ool o manage he incoming
messages wi h me ada a eco ds (s anda dised me ada a inges ion) om ex e nal da a
holde s. Fo ins ance, when a message is ecei ed con aining upda ed desc ip ions o a
da ase collec ion, his sc eening mechanism will push he message and pe o m an
ini ial alida ion o e i y whe he he me ada a con o ms o he equi ed s anda ds o
publica ion.
• Ca alogue adminis a o p o iles will be in place and will equi e au hen ica ion (login);
all ope a ions will be logged o keep ack o changes made o da ase desc ip ions o
audi abili y pu poses. A ca alogue manage will be esponsible o he publica ion,
main enance and quali y assu ance o da ase s wi hin he Na ional Da ase Ca alogue.
This ole includes coo dina ing wi h da a holde s o p epa e and alida e me ada a,
ensu ing alignmen wi h na ional and Eu opean s anda ds (e.g., Heal h DCAT-AP) and
app op ia e da a quali y and u ili y labels. The ca alogue manage plays a key ole in
enhancing he disco e abili y, in e ope abili y and us wo hiness o da ase s a ailable
o euse.
Examples o ca alogue adminis a o p o iles:
o Da a Go e nance o Ca alogue Ope a ions Uni
o Designa ed cu a o s o echnical s a suppo ing publica ion wo k lows
• An in e ace o managing and e iewing da ase desc ip ions will be made a ailable o
ca alogue adminis a o s ia he ca alogue backend.
• The ca alogue will be en i ely decoupled om da a s o age sys ems and e e ence ables,
ensu ing a secu e and con olled en i onmen . Only me ada a and desc ip i e
in o ma ion ha canno be used o iden i y indi iduals will be exposed in he public
ca alogue.
• The ca alogue will also epo s a is ical in o ma ion ela ed o da ase access and usage
as pa o hei biennial ac i i y epo s.
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4.5. API o he da a access applica ion/da a eques o m po al
While na iga ing he ca alogue, po en ial applican s will be able o selec he da ase s hey
in end o eques using a dedica ed selec ion bu on. As men ioned in 4.1, he da ase s o
in e es will be sa ed on a baske (simila o an e-comme ce shopping ca ), and his selec ion is
s o ed ia session cookies. In he in as uc u e unde de elopmen , he da a access
applica ion/da a eques o ms will be held in ano he po al ha will ope a e independen ly
om he ca alogue’s. Ne e heless, bo h po als a e i ame connec ed. A obus secu i y
amewo k will ensu e ha he ele an in o ma ion om he selec ed da ase s will mig a e om
he ca alogue baske o he da a access applica ion/ da a eques pla o m. A leas , mig a ion o
he da ase ID will be ensu ed.
Upon logging in o he p i a e a ea o he po al o eques ing access o da a/da a, he me ada a
on he use ’s chosen da ase s will be au oma ically impo ed ia an API in o he da a access
applica ion/da a eques o m, p e- illing he co esponding o m ields, s eamlining he
applica ion p ocess and a oiding e o s ela ed wi h manual inpu s.
4.6. Me ada a inges ion
• A dedica ed wo k low will be implemen ed o manage he inges ion o me ada a,
ecei ing da ase desc ip ions om da a holde s h ough FDPs using s anda dized
o ma s and in e aces. Fu he mo e, annual main enance cycles and an au oma ed
no i ica ion mechanism (e.g., sys em clock ale s) will be es ablished o p omp imely
upda es and no i ica ions and o ensu e ongoing me ada a quali y and compliance wi h
EHDS equi emen s on me ada a upda es.
• An API will be implemen ed o acili a e he impo ing o me ada a om ex e nal
en i ies, ensu ing seamless in eg a ion wi h hi d-pa y sys ems and keeping he
ca alogue’s me ada a up- o-da e and comp ehensi e.
• Da a holde s will always be no i ied in cases o app o al, publica ion, o e oca ion o
hei da ase s.
• A secu e messaging p o ocol will be es ablished o allow he exchange o me ada a and
o he ele an in o ma ion be ween he da a holde s and he ca alogue adminis a o s.
This mechanism will gua an ee he in eg i y and secu i y o he messages, enabling
e icien communica ion and upda es.
• As men ioned in 4.3, mechanisms will be in place o alida e he compliance o da ase
desc ip ions wi h Heal hDCAT-AP equi emen s.
• To ensu e he legi imacy o he da a holde s sending messages and me ada a, a secu e
iden i y e i ica ion p ocess will be in place (e.g. using an acc edi ed ins i u ional e-mail).
• Da a holde s will be no i ied o he upda e equi emen s and guided h ough a
s anda dized p ocess o submi ing he upda ed me ada a, building on exis ing
expe ience wi h he Po uguese NHS T anspa ency Po al desc ibed in 3.5.1.
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4.7. Ca alogue API o synch onisa ion wi h Heal hDa a@EU da ase s
ca alogue upon CRUD ope a ions
• The c oss-bo de engine (CBE) is one o he na ional componen s wi hin he HDAB
amewo k, b idging he na ional da ase s ca alogue wi h he da ase s ca alogue om
he Eu opean in as uc u e Heal hDa a@EU. The CBE will au oma ically de ec when an
al e a ion occu s in he ca alogue ( o example, an addi ion o a new da ase o an
upda e in an exis ing da ase in he na ional da ase s ca alogue) and will subsequen ly
in oke he co esponding heal h da a dispa che APIs
3
. The heal h da a dispa che will
hen p epa e he message communica ing hese changes, ha will be ansmi ed o he
cen al Eu opean pla o m (Heal hDa a@EU) ia eDeli e y, h ough he C oss-bo de
Ga eway, o hese al e a ions in he na ional ca alogue o be e lec ed on he
Heal hDa a@EU da ase s ca alogue.
• A e he message in o ming on he al e a ions on he na ional ca alogue is ecei ed in
he Heal hDa a@EU cen al se ices, a e u n message in o ming abou he success o
he ope a ion will be sen om he cen al se ices o he na ional in as uc u e. The
ope a ion s a us ansmi ed hough he e u ning message will be s o ed in he
da abase o he heal h da a dispa che . The CBE should allow o au oma ically e i y he
s a us o hese ope a ions, gene a ing ale s when a ailu e o lack o acknowledgmen
occu s.
4.8. Non- unc ional equi emen s
As ou lined in he D5.3 Technical Speci ica ion o he Na ional Me ada a Ca alogue om he
TEHDAS2 p ojec [3], i is also ecommended ha Membe S a es conside a se o non-
unc ional equi emen s when de eloping hei na ional da ase ca alogues, o os e a common
baseline o pe o mance, a ailabili y, eliabili y, and secu i y ac oss EU coun ies.
Key non- unc ional aspec s include:
• A ailabili y: Ta ge ing a sys em up ime o a leas 99%, excluding planned main enance.
• Pe o mance: Ensu ing quick esponses o ypical me ada a que ies (ideally unde 1
second).
• Reliabili y: Implemen ing ailu e de ec ion and eco e y o suppo sys em s abili y.
• Scalabili y: Suppo ing g ow h in da ase olume and use access wi hou a ec ing
pe o mance.
• Secu i y and Access Con ol: Applying app op ia e access con ols, au hen ica ion, and
au ho isa ion—de ined na ionally— o p o ec sensi i e me ada a and main ain sys em
in eg i y.
3
The c oss-bo de ga eway, heal h da a dispa che and c oss-bo de engine a e 3 componen s ha
oge he ensu e he ansmission o eDeli e y messages om he na ional da ase s ca alogue o he
Heal hDa a@EU da ase s ca alogue. Fu he de ails on his componen s a e ou o he scope o his
deli e able and can be consul ed in Heal hDa a@PT deli e able 8.1 and in he Heal hDa a@EU elease 4
ela ed documen a ion [24].
43
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• T aining (Fo HDAB S a , da a use s, da a holde s) on ca alogue ma e s.
These abo emen ioned non- unc ional equi emen s we e also conside ed when d a ing he
equi emen s and du ing he de elopmen o Heal hDa a@PT na ional da ase s ca alogue.
Likewise, and ega ding aining, wo in e nal wo kshops o HDAB echnical eams we e
conduc ed in 2025 ( u he de ails in D2.3 o Heal hDa a@PT) and aining modules a e being
cons uc ed o da a holde s and da a use s.
44
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5. Building up he na ional da ase s ca alogue
The ollowing sec ions p esen a comp ehensi e desc ip ion o he ongoing wo k on
implemen ing he Heal hDa a@PT na ional da ase s ca alogue.
5.1. Da ase Speci ica ions
The minimum iable p oduc (MVP) o he Heal hDa a@PT nHDsC will con ain 25 da ase s, ully
desc ibed using he Heal hDCAT-AP me ada a s anda d. To ha end, he de ini ion and
ca aloguing o da ase s a e cu en ly in p og ess, using da a om he NHS In o ma ion and
Moni o ing Sys em (SIMSNS) da abase and ollowing A icle 51 o he EHDS egula ion. The
da ase s selec ed o ca aloguing a e based on ca ego ies o which da a is a ailable in SIMSNS
and aligned wi h cu en key opics, such as majo diseases iden i ied by he WHO. Ano he
impo an ac o ha was conside ed was he in e es o na ional esea che s in speci ic da a,
based on he insigh ga he ed h ough eques s p e iously ecei ed.
Table 4 exhibi s some ea u es o he i s da ase s unde p epa a ion o he Po uguese
Heal hDa a@PT da ase s ca alogue, p o iding he da ase ’s name, a sho desc ip ion o i s
con en s, he EHDS Regula ion A 51 heal h da a ca ego y i belongs o, and examples o
con ained a iables and use cases a e p esen ed. These da ase s a e being desc ibed ollowing
he me ada a s anda d Heal hDCAT-AP.
Table 4. Sample o 8 da ase s desc ibed wi h he Heal hDCAT-AP s anda d, o he nHDsC MVP.
Da ase
Desc ip ion
A . 51
ca ego ya
Example o
Va iables
Example use-case
Reason o
consul a ion in
P ima y Heal h
Ca e Uni s
Regis a ion o he
eason o
consul a ion, by ICPC-
2 code (In e na ional
Classi ica ion o
P ima y Ca e).
l
Gende , age, da e o
consul a ion, ICPC
code.
Du ing he yea
2020, how many
people we e
diagnosed wi h
ube culosis in
p ima y heal h
ca e?
Vaccines
Reco d o accine
adminis a ion
acco ding o he
accina ion plan.
c
Gende , yea o bi h,
dea h (yes/no), yea
o dea h, da e o
adminis a ion,
loca ion, accine ID
( ollowing Po uguese
DGS classi ica ion),
accine ba ch.
Moni o he
adminis a ion o
he e anus accine
in he Po uguese
popula ion.
COVID-19
accines
Reco d o he
adminis a ion o
COVID-19 accines.
c
Gende , yea o bi h,
dea h (yes/no), yea
o dea h, da e o
adminis a ion,
loca ion, accine ID,
accine ba ch.
Moni o he COVID-
19 accina ion in
2023.
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Da ase
Desc ip ion
A . 51
ca ego ya
Example o
Va iables
Example use-case
Diagnosis and
moni o ing o
Hype ension
Moni o ing o he
p og am o he
ollow-up o pa ien s
wi h hype ension.
Includes da a since
2015, o all pa ien s
diagnosed wi h
hype ension.
l
Reco ds o weigh ,
heigh , blood
p essu e
measu emen s, and
o he pa ien da a
collec ed du ing
ollow-up
appoin men s.
Find ou how many
people in he
popula ion ha e
high blood
p essu e, how many
a e women, and
how many pa ien s
a e o e weigh .
Medica ion o
pa ien s wi h
Hype ension
Iden i ica ion o
ch onic medica ion
aken by pa ien s
diagnosed wi h
hype ension, wi h
and wi hou
associa ed issues,
ollowed up in
P ima y Heal h Ca e
uni s.
o
P esc ip ion da e, end
da e o medica ion,
ac i e ing edien s,
dosage, de ined daily
dose, medica ion
o m and quan i y,
medica ion
desc ip ion.
Check he mos
common
medica ion used in
he popula ion
diagnosed wi h
hype ension.
Diagnosis and
moni o ing o
diabe es
Moni o ing o he
ollow-up p og am o
pa ien s wi h diabe es
( ypes I, II, and
ges a ional). Da a
since 2015, o all
pa ien s iden i ied
wi h diabe es.
l
Weigh , heigh ,
abdominal
ci cum e ence, as ing
blood glucose,
pos p andial blood
glucose, glyca ed
hemoglobin.
S udy o weigh
a ia ions in
pa ien s wi h ype II
diabe es.
Medica ion o
pa ien s wi h
diabe es
Iden i ica ion o
ch onic medica ion
aken by pa ien s wi h
diabe es ( ypes I, II,
and ges a ional),
ollowed up in
P ima y Heal h Ca e
uni s.
o
P esc ip ion da e, end
da e o medica ion,
ac i e ing edien s,
dosage, de ined daily
dose, medica ion
o m and quan i y,
medica ion
desc ip ion.
Check he mos
common
medica ion in he
popula ion
diagnosed wi h
diabe es.
Elec onic
p esc ip ion o
medica ions.
Moni o he
elec onic p esc ip ion
o medica ions, also
conside ing he
numbe o packages
p esc ibed acco ding
o he In e na ional
Nonp op ie a y
Name.
o
Pe iod (mon h/yea ),
egion, o al numbe
o p esc ip ions;
numbe o packages
p esc ibed by b and
(by excep ion A, B, C).
Check he numbe
o p esc ip ions in a
speci ic egion o
Po ugal du ing he
pe iod o 2020 and
2021.
46
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5.2. Me ada a speci ica ions
Beyond he manda o y Heal hDCAT-AP p ope ies p esen in Annex 2, he me ada a o he
da ase s p esen in he Heal hDa a@PT nHDsC will also ea u e some Heal hDCAT-AP
ecommended p ope ies (Table 5). These we e chosen based bo h on hei u ili y as possible
ca alogue sea ch il e s and on hei gene al u ili y o he da a use ( o example, he p ope ies
“Numbe o Reco ds” and “Numbe o unique indi iduals” o en a e exclusion ac o s o
esea che s ha equi e la ge sample size o coho s udies).
Table 5. Heal hDCAT-AP Recommended P ope ies ha will be manda o y in he PT nHDsC me ada a.
P ope y
Desc ip ion
F equency
The equency a which he da ase is upda ed.
Landing Page
A web page ha p o ides access o he da ase ,
i s dis ibu ions and/o addi ional in o ma ion.
Legal Basis
The legal basis used o jus i y p ocessing o
pe sonal da a
Language
Language o he Da ase
Max Age
Maximum ypical age o he popula ion wi hin
he da ase
Min Age
Minimum ypical age o he popula ion wi hin
he da ase
Numbe o Reco ds
Size o he da ase in e ms o he numbe o
eco ds
Numbe o unique indi iduals
Numbe o eco ds o unique indi iduals
Pe sonal Da a
Key elemen s ha ep esen an indi idual in he
da ase
Popula ion Co e age
A de ini ion o he popula ion wi hin he
da ase
Tempo al Co e age
A empo al pe iod ha he da ase co e s
Tempo al Resolu ion
The minimum pe iod esol able in he da ase
Addi ionally, a da a dic iona y including all o he da ase s’ a iables will be included in wi h i s
espec i e sample (i.e. mock-up, anonymized o syn he ic da a), o be e in o m da a use s on
da ase s´ cha ac e is ics and s uc u e. The da ase sample will always be cons i u ed by
syn he ic da a whene e possible, and anonymised da a o he wise, o minimize eiden i ica ion
isk.
Following he EHDS Regula ion, a da a quali y and u ili y label will also be included as me ada a
o all da ase s inanced wi h public unds (Eu opean and/o Na ional). This label will ollow he
QUANTUM (h ps://quan ump ojec .eu) equi emen s and speci ica ions [25,26].
47
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5.3. nHDsC Mock-up
The i s e sion o he nHDsC has begun cons uc ion, using CKAN. To s a o wi h ca alogue
de elopmen , da ase s p esen in he Heal hDa a@EU cen al ca alogue we e impo ed, o
s eamline he de elopmen p ocess o he use in e ace wi h da ase s al eady a ailable using
he Heal hDCAT-AP s anda d. The i s de elopmen e sion (Figu e 29) exhibi s some o he
basic sea ch unc ionali ies p o ided, including a ee- ex sea ch unc ion and basic il e ing
capabili ies by keywo ds.
Figu e 29. Fi s de elopmen e sion o he Po uguese na ional da ase s ca alogue.
In Figu e 30, an example o a da ase eco d can be seen: his page includes all key in o ma ion
ela ed o he da ase , such as when i was las upda ed, he da a holde , he HDAB, and a
desc ip ion o he da ase . Since he nHDsC and he DAAMs solu ions will be connec ed, he page
also ins uc s he da a use on how o apply o da a access, and ea u es an in e ac able elemen
o quickly add he da ase o he baske .
54
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Annex 2. Manda o y P ope ies o he Heal hDCAT-AP S anda d
Table 7. Manda o y p ope ies o he main classes o he Heal hDCAT-AP S anda d ( o non-public da a).
Classes wi hou manda o y p ope ies a e ins ead hype linked o hei de ini ion [19].
Class
Manda o y
P ope y
Desc ip ion
Agen
Name
Name o an Agen
Ca alogue
Applicable
legisla ion
Legisla ion applicable o he esou ce
Desc ip ion
An accoun o he Ca alogue
Publishe
The Agen esponsible o making he Ca alogue
a ailable
Ti le
Name o he Ca alogue
Ca alogue Reco d
Modi ica ion da e
La es da e when he Ca alogue was changed
P ima y opic
Link o he esou ce desc ibed in he eco d
Ca alogue
Resou ce
N/A
N/A
Concep
N/A
N/A
Da ase
Access igh s
In o ma ion ega ding whe he he Da ase is
publicly a ailable, no public, o i access
es ic ions apply
Applicable
legisla ion
Legisla ion applicable o he c ea ion o
managemen o he Da ase
Con ac poin
Con ac in o ma ion o communica ion ega ding
he esou ce
Da ase
dis ibu ion
An a ailable Dis ibu ion o he Da ase
Desc ip ion
An accoun o he Da ase
Geog aphical
co e age
Spa ial co e age o he Da ase
Heal h ca ego y
Heal h ca ego y acco ding o he elec onic da a o
seconda y use egula ion, A .33
Heal h da a access
body
In o ma ion ega ding he HDAB he Da ase
o igina es om
Heal h heme
Wikida a URIs con aining he hemes ela ed o he
Da ase
Iden i ie
Main URI o o he iden i ie o he Da ase
Keywo d
Tag desc ibing he Da ase
P o enance
S a emen ega ding he o igin and cus ody o he
Da ase
Publishe
The Agen making he Da ase a ailable
Publishe no e
Sho desc ip ion o he Publishe ac i i ies
Publishe ype
Type o publishe p o iding he Da ase
Pu pose
Finali y o he p ocessing o da a o pe sonal da a.
Sample
Sample dis ibu ion o he Da ase
Theme
A Ca ego y o he Da ase (a Da ase can ha e
mul iple Themes, e.g. Vaccines, COVID-19 – All
linked h ough wikida a)
55
D6.1 Na ional da ase ca alogue equi emen s and speci ica ions
Ve sion 1.0
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Class
Manda o y
P ope y
Desc ip ion
Da ase
Ti le
Name o he Da ase
Type
Na u e o he Da ase (e.g. Pe sonal Da a)
Dis ibu ion
Access URL
URL ha p o ides access o a Dis ibu ion o a
Da ase
Applicable
legisla ion
Legisla ion applicable o he Dis ibu ion o he
Da ase
Loca ion
N/A
Rela ionship
N/A
Righ s S a emen
N/A
56
Se ing up a Heal h Da a Access Body in Po ugal and laying he
na ional ounda ions o EHDS2
Copy igh © 2025 Heal hDa a@PT. All igh s ese ed.
