São João health data repository - The firsts steps

Campos, Maria João; Pedrosa, Afonso; Gonçalves, Maria Fernanda; Azevedo, Ana; Antunes, Luís; Carvalho, José; Ferreira, Miguel; Monteiro, Manuel João Curopos

Abstract

This poster delineates the establishment of the São João Health Data Repository at Centro Hospitalar Universitário de São João (CHUSJ), a Portuguese university public hospital, employing Dataverse software. From a management perspective, this being a service integrated in the healthcare context, it must conform to strict requirements when it comes to publication policies and data curation. Such processes aim to avoid the inadvertent disclosure of patients' sensitive information to unauthorized people. Our objective is to not only publish data publicly but also to securely provide traceable data to researchers who have approved projects at CHUSJ, ensuring that the risk of subjects’ re- identification remains below 1%. This dual approach facilitates open access to information while maintaining stringent privacy standards for data that may be sensitive. The goals of providing this service are: - To improve collaboration and knowledge sharing within the healthcare network. - To promote Open Science and the use of open infrastructure. - To ensure data is properly managed, documented, and preserved for long-term use. The service is based on a dockerized version of Dataverse with additional components and integrations such as a preview component and statistical dashboards supported by Apache Superset. The Health Data Repository allows healthcare providers to upload and share clinical research data securely with persistent identifiers. All datasets made available to the general public have been submitted to a risk analysis procedure that reduces the chances of patient re-identification, even when data has been anonymised. This risk analysis methodology, which is being developed in the context of CHUSJ, has already been approved by the national data protection authority (https://www.cnpd.pt/umbraco/surface/cnpdDecision/download/122003). The Health Data Repository is still in its infancy but it intends to showcase health data that will impact healthcare and also society as a whole. The first dataset to become available aims to provide a set of data in a shared data model with attribute-based access in order to respond more swiftly and efficiently to the continuing high number of access requests for clinical research purposes about COVID-19. This approach allows for a wiser allocation of human resources currently assigned to this function (information system teams and data protection officers), the mitigation of the impact on data subjects' rights and improvement of data quality for research purposes.

São João health data repository - The firsts steps

Author: Campos, Maria João; Pedrosa, Afonso; Gonçalves, Maria Fernanda; Azevedo, Ana; Antunes, Luís; Carvalho, José; Ferreira, Miguel; Monteiro, Manuel João Curopos

Year: 2023

Source: https://repositorium.uminho.pt/bitstreams/be8e1f08-4d54-4842-b232-d9b7c5caebcc/download

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DCM23 Pos e Submission
Da a e se Communi y Mee ing 2023, June 5-7, 2023, B aga, Po ugal
São João Heal h Da a Reposi o y - The Fi s s S eps
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Au ho (s)"
● Ma ia João Campos, Cen o Hospi ala Uni e si á io São João, Po ugal
● A onso Ped osa, Cen o Hospi ala Uni e si á io São João, Po ugal
● Ma ia Fe nanda Gonçal es, Cen o Hospi ala Uni e si á io São João, Po ugal
● Ana Aze edo, Cen o Hospi ala Uni e si á io São João, Po ugal
● Luis An unes, FCUP, Uni e sidade do Po o, Po ugal
● José Ca alho, KEEP SOLUTIONS, Po ugal
● Miguel Fe ei a, KEEP SOLUTIONS, Po ugal
● Manuel Mon ei o, KEEP SOLUTIONS, Po ugal
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Pos e abs ac
This pos e delinea es he es ablishmen o he São João Heal h Da a Reposi o y a Cen o
Hospi ala Uni e si á io de São João (CHUSJ), a Po uguese uni e si y public hospi al, employing
Da a e se so wa e.
F om a managemen pe spec i e, his being a se ice in eg a ed in he heal hca e con ex , i mus
con o m o s ic equi emen s when i comes o publica ion policies and da a cu a ion. Such
p ocesses aim o a oid he inad e en disclosu e o pa ien s' sensi i e in o ma ion o unau ho ized
people. "
Ou objec i e is o no only publish da a publicly bu also o secu ely p o ide aceable da a o
esea che s who ha e app o ed p ojec s a CHUSJ, ensu ing ha he isk o subjec s’ e-
iden i ica ion emains below 1%. This dual app oach acili a es open access o in o ma ion while
main aining s ingen p i acy s anda ds o da a ha may be sensi i e.
The goals o p o iding his se ice a e:
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● To imp o e collabo a ion and knowledge sha ing wi hin he heal hca e ne wo k.
● To p omo e Open Science and he use o open in as uc u e.
● To ensu e da a is p ope ly managed, documen ed, and p ese ed o long- e m use.
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The se ice is based on a docke ized e sion o Da a e se wi h addi ional componen s and
in eg a ions such as a p e iew componen and s a is ical dashboa ds suppo ed by Apache
Supe se .
The Heal h Da a Reposi o y allows heal hca e p o ide s o upload and sha e clinical esea ch da a
secu ely wi h pe sis en iden i ie s. "
All da ase s made a ailable o he gene al public ha e been submi ed o a isk analysis p ocedu e
ha educes he chances o pa ien e-iden i ica ion, e en when da a has been anonymised. This
isk analysis me hodology, which is being de eloped in he con ex o CHUSJ, has al eady been
app o ed by he na ional da a p o ec ion au ho i y
(h ps://www.cnpd.p /umb aco/su ace/cnpdDecision/download/122003).
The Heal h Da a Reposi o y is s ill in i s in ancy bu i in ends o showcase heal h da a ha will
impac heal hca e and also socie y as a whole.
The i s da ase o become a ailable aims o p o ide a se o da a in a sha ed da a model wi h
a ibu e-based access in o de o espond mo e swi ly and e icien ly o he con inuing high
numbe o access eques s o clinical esea ch pu poses abou COVID-19.
This app oach allows o a wise alloca ion o human esou ces cu en ly assigned o his unc ion
(in o ma ion sys em eams and da a p o ec ion o ice s), he mi iga ion o he impac on da a
subjec s' igh s and imp o emen o da a quali y o esea ch pu poses.
Keywo ds
Da a, Hospi al, COVID-19, Implemen a ion.
Rela ed p ojec s o ini ia i es
h ps://supe se .apache.o g.
h ps://gi hub.com/gdcc/da a e se-p e iewe s
Communi y mee ing opics
- Me ics & usage s a is ics;
- Sensi i e Da a;
- In eg a ions & Ex e nal Tools;
- FAIRness & in e ope abili y
- P ese a ion