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Publicações

Publicações por Vasco Rosa Dias

2021

Sharing Biomedical Data: Strengthening AI Development in Healthcare

Autores
Pereira, T; Morgado, J; Silva, F; Pelter, MM; Dias, VR; Barros, R; Freitas, C; Negrao, E; de Lima, BF; da Silva, MC; Madureira, AJ; Ramos, I; Hespanhol, V; Costa, JL; Cunha, A; Oliveira, HP;

Publicação
HEALTHCARE

Abstract
Artificial intelligence (AI)-based solutions have revolutionized our world, using extensive datasets and computational resources to create automatic tools for complex tasks that, until now, have been performed by humans. Massive data is a fundamental aspect of the most powerful AI-based algorithms. However, for AI-based healthcare solutions, there are several socioeconomic, technical/infrastructural, and most importantly, legal restrictions, which limit the large collection and access of biomedical data, especially medical imaging. To overcome this important limitation, several alternative solutions have been suggested, including transfer learning approaches, generation of artificial data, adoption of blockchain technology, and creation of an infrastructure composed of anonymous and abstract data. However, none of these strategies is currently able to completely solve this challenge. The need to build large datasets that can be used to develop healthcare solutions deserves special attention from the scientific community, clinicians, all the healthcare players, engineers, ethicists, legislators, and society in general. This paper offers an overview of the data limitation in medical predictive models; its impact on the development of healthcare solutions; benefits and barriers of sharing data; and finally, suggests future directions to overcome data limitations in the medical field and enable AI to enhance healthcare. This perspective is dedicated to the technical requirements of the learning models, and it explains the limitation that comes from poor and small datasets in the medical domain and the technical options that try or can solve the problem related to the lack of massive healthcare data.

2022

Joint controllers in large research consortia: a funnel model to distinguish controllers in the sense of the GDPR from other partners in the consortium

Autores
Van Veen, E; Boeckhout, M; Schlünder, I; Boiten, JW; Dias, V;

Publicação
Open Research Europe

Abstract
Large European research consortia in the health sciences face challenges regarding the governance of personal data collected, generated and/or shared during their collective research. A controller in the sense of the GDPR is the entity which decides about purposes and means of the data processing. Case law of the Court of Justice of the European Union (CJEU) and Guidelines of the European Data Protection Board (EDPB) indicate that all partners in the consortium would be joint controllers. This paper summarises the case law, the Guidelines and literature on joint controllership, gives a brief account of a webinar organised on the issue by Lygature and the MLC Foundation. Participants at the webinar agreed in large majority that it would be extreme if all partners in the consortium would become joint controllers. There was less agreement how to disentangle partners who are controllers of a study from those who are not. In order to disentangle responsibilities, we propose a funnel model with consecutive steps acting as sieves in the funnel. It differentiates between two types of partners: all partners who are involved in shaping the project as a whole versus those specific partners who are more closely involved in a sub-study following from the DoA or the use of the data Platform. If the role of the partner would be comparable to that of an outside advisor, that partner would not be a data controller even though the partner is part of the consortium. We propose further nuances for the disentanglement which takes place in various steps. Uncertainty about formal controllership under the GDPR can stifle collaboration in consortia due to concerns over (shared) responsibility and liability. Data subjects’ ability to exercise their right can also be affected by this. The funnel model proposes a way out of this conundrum.

2021

Record linkage of population-based cohort data from minors with national register data: A scoping review and comparative legal analysis of four European countries

Autores
Doetsch J.N.; Dias V.; Indredavik M.S.; Reittu J.; Devold R.K.; Teixeira R.; Kajantie E.; Barros H.;

Publicação
Open Research Europe

Abstract
Background: The GDPR was implemented to build an overarching framework for personal data protection across the EU/EEA. Linkage of data directly collected from cohort participants, potentially serving as a prominent tool for health research, must respect data protection rules and privacy rights. Our objective was to investigate law possibilities of linking cohort data of minors with routinely collected education and health data comparing EU/EEA member states. Methods: A legal comparative analysis and scoping review was conducted of openly accessible published laws and regulations in EUR-Lex and national law databases on GDPR's implementation in Portugal, Finland, Norway, and the Netherlands and its connected national regulations purposing record linkage for health research that have been implemented up until April 30, 2021. Results: The GDPR does not ensure total uniformity in data protection legislation across member states offering flexibility for national legislation. Exceptions to process personal data, e.g., public interest and scientific research, must be laid down in EU/EEA or national law. Differences in national interpretation caused obstacles in cross-national research and record linkage: Portugal requires written consent and ethical approval; Finland allows linkage mostly without consent through the national Social and Health Data Permit Authority; Norway when based on regional ethics committee's approval and adequate information technology safeguarding confidentiality; the Netherlands mainly bases linkage on the opt-out system and Data Protection Impact Assessment. Conclusions: Though the GDPR is the most important legal framework, national legislation execution matters most when linking cohort data with routinely collected health and education data. As national interpretation varies, legal intervention balancing individual right to informational self-determination and public good is gravely needed for health research. More harmonization across EU/EEA could be helpful but should not be detrimental in those member states which already opened a leeway for registries and research for the public good without explicit consent.

2022

Geoprivacy in Neighbourhoods and Health Research: A Mini-Review of the Challenges and Best Practices in Epidemiological Studies

Autores
Ribeiro, AI; Dias, V; Ribeiro, S; Silva, JP; Barros, H;

Publicação
PUBLIC HEALTH REVIEWS

Abstract
Neighbourhood and health research often relies on personal location data (e.g., home address, daily itineraries), despite the risks of geoprivacy breaches. Thus, geoprivacy is an important emerging topic, contemplated in international regulations such as the General Data Protection Regulation. In this mini-review, we briefly assess the potential risks associated with the usage of personal location data and provide geoprivacy-preserving recommendations to be considered in epidemiological research. Risks include inference of personal information that the individual does not wish to disclose, reverse-identification and security breaches. Various measures should be implemented at different stages of a project (pre-data collection, data processing, data analysis/publication and data sharing) such as informed consent, pseudo-anonymization and geographical methods.

2022

Record linkage of routine and cohort data of children in Portugal: challenges and opportunities when using record linkage as a tool for scientific research

Autores
Doetsch, JN; Dias, V; Lopes, I; Redinha, R; Barros, H;

Publicação
MEDICAL LAW REVIEW

Abstract
Linking records could serve as a useful tool for scientific research and as a facilitator for local policymaking. This article examines the challenges and opportunities for researchers to lawfully link routinely collected health and education data with cohort data of children when using it as a tool for scientific research in Portugal. Such linking can be lawfully conducted in Portugal if three requirements are met. First, data processing pursues a legitimate purpose, such as scientific research. Secondly, data linking complies with the legal obligations of research entities and researchers, acting as data controllers or processors, and it respects the rights of children as data subjects. Finally, data linking is based on the explicit written consent of those with parental responsibility for the child. So far, the implementation of the General Data Protection Regulation in Portugal has not facilitated record linkage. It is argued that further harmonised implementation of that Regulation across European Union and European Economic Area Member States, establishing a minimum shared denominator for record linkage in scientific research for the common good, including without explicit consent, is needed.