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DV4RDA
Adding Da a Visi a ion language o ICFs
Templa e Ve sion: 1.1c
Templa e Da e: No 24, 2025
P epa ed by: Pa icia Buendia , Seonyoung Kim , DV4RDA p ojec , EOSC Fu u e/RDA
A i icial In elligence and Da a Visi a ion Wo king G oup (AIDV WG), Resea ch Da a Alliance(RDA)
Desc ip ion
Inco po a ing Da a Visi a ion language in o an In o med Consen Fo m (ICF) equi es clea , non-
echnical language ha explains he concep and, impo an ly, how i bene i s he pa icipan by
p o ec ing hei p i acy.
INSTRUCTIONS
This language should be added p ima ily wi hin he "Con iden iali y" o "How You In o ma ion Will
Be Kep P i a e" sec ion o he ICF. You may also b ie ly men ion i in he
"S udy P ocedu es" o "Da a Handling" sec ions i hose exis , bu he co e explana ion and p i acy
implica ions belong in he Con iden iali y sec ion.
Key hings o ensu e when using his language:
● Simplici y: A oid ja gon. Explain he co e concep (analysis goes o da a, da a s ays pu )
clea ly.
● Focus on Bene i : Emphasize ha his me hod is used o p o ec hei p i acy and
minimize isk o hei da a.
● Accu acy: Ensu e he desc ip ion accu a ely e lec s how you speci ic implemen a ion o
da a isi a ion wo ks.
● Consis ency: The language he e mus be consis en wi h he mo e de ailed desc ip ion
p o ided in he IRB p o ocol submi ed o he e iew boa d.
● Con ex : Place his ex logically wi hin he Con iden iali y sec ion, ensu ing i lows wi h
he su ounding ex abou da a coding, secu e s o age, e c.
Below is p oposed language, s uc u ed o i wi hin a s anda d ICF o ma . Remembe o adap
his o he speci ic de ails o you s udy, including he ype o da a, whe e i 's s o ed, and he
speci ic pla o m used.
P oposed addi ions o key sec ions a e p esen ed below o wo sec ions: Con iden iali y and
Da a Handling.
DOI: 10.15497/RDA00143
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PROPOSED ADDITIONS TO THE INFORMED CONSENT FORM
Sec ion: Con iden iali y / How You In o ma ion Will Be Kep Con iden ial
Inse his ex a e he s anda d language abou coding da a, secu e s o age, and who has
access (e.g., s udy eam, egula o y bodies):
Addi ional P i acy P o ec ion Me hod: Using Da a Visi a ion
We may use a me hod called “Da a Visi a ion” o help p o ec you p i acy when
you da a is analyzed.
He e's how i wo ks and how i helps p o ec you:
1. You In o ma ion S ays Secu e: You sensi i e s udy da a (such as es
esul s o heal h his o y) will be sa ely s o ed on p o ec ed compu e
sys ems a [e.g., he hospi al, uni e si y, o secu e da a cen e ]. I will no be
copied o ans e ed elsewhe e o analysis.
2. Analysis Happens Inside he Secu e Sys em: Ins ead o ans e ing you
da a elsewhe e o analysis, he app o ed analysis ools a e un di ec ly
wi hin he secu e sys em whe e you da a is s o ed.
3. Only Sa e Resul s A e Sha ed: Once he analysis is comple e, only
summa ies o esul s ha canno iden i y you pe sonally (such as a e ages
ac oss many pa icipan s) may lea e he secu e sys em. These summa ies
a e ca e ully e iewed o ensu e hey canno be used o de e mine you
iden i y.
4. Why We Use Da a Visi a ion: This app oach adds an ex a laye o p i acy
p o ec ion. By keeping you sensi i e da a secu ely s o ed in one loca ion
and only allowing de-iden i ied esul s o lea e he secu e esea ch
en i onmen , we ensu e ha no one ou side he s udy eam e e sees you
name o p i a e de ails.
Op ional: B ie men ion in S udy P ocedu es o Da a Handling Sec ion
I he e's a sec ion desc ibing how da a is handled o analyzed, you could add a b ie sen ence
e e ing o he main explana ion:
Da a Handling & Analysis:
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Fo he analysis o he collec ed da a, we will use a secu e me hod called Da a
Visi a ion. You can ead mo e abou how you p i acy is p o ec ed in he
“Con iden iali y” sec ion o his o m.
Ci e as: P. Buendia, S. Kim. “Adding Da a Visi a ion language o ICFs.” DV4RDA P ojec o he
EOSC-Fu u e/RDA A i icial In elligence and Da a Visi a ion Wo king G oup. Resea ch Da a
Alliance. No embe 14, 2025. DOI: 10.15497/RDA00143
Acknowledgemen s
This DV4RDA p ojec has ecei ed unding h ough RDA TIGER om
he Eu opean Union’s Ho izon Eu ope amewo k p og amme unde
g an ag eemen No. 101094406. 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 ins i u ions ep esen ed he e. Nei he he
Eu opean Union no he ins i u ions can be held esponsible o hem.
