Preservação da privacidade no enfrentamento da COVID-19: dados pessoais e a pandemia global

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Abstract

Resumo Dados ganham cada vez mais importância e valor na busca de respostas para enfrentar a COVID-19 tanto para a ciência quanto para as autoridades sanitárias. Em virtude da dificuldade de realizar diagnóstico da infecção na população em geral, iniciativas apoiadas em tecnologias digitais vêm sendo desenvolvidas por governos ou empresas privadas para possibilitar rastreamentos de sintomas, contatos e deslocamentos de modo a apoiar estratégias de acompanhamento e avaliação na vigilância de contágios. A despeito da importância e necessidade dessas iniciativas, questionamentos acerca da quantidade e tipos de dados pessoais coletados, processados, compartilhados e utilizados em nome da saúde pública, bem como os concomitantes ou posteriores usos desses dados, suscitam questionamentos éticos, legais e técnicos. Desafios que apontam para a necessidade de novos modelos de governança de dados e de tecnologias, responsáveis e transparentes, para controlar o Sars-Cov2 e as futuras emergências de saúde pública.

Translated abstract

Abstract Data has become increasingly important and valuable for both scientists and health authorities searching for answers to the COVID-19 crisis. Due to difficulties in diagnosing this infection in populations around the world, initiatives supported by digital technologies are being developed by governments and private companies to enable the tracking of the public's symptoms, contacts and movements. Considering the current scenario, initiatives designed to support infection surveillance and monitoring are essential and necessary. Nonetheless, ethical, legal and technical questions abound regarding the amount and types of personal data being collected, processed, shared and used in the name of public health, as well as the concomitant or posterior use of this data. These challenges demonstrate the need for new models of responsible and transparent data and technology governance in efforts to control SARS-COV2, as well as in future public health emergencies.

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Is Open Access

Challenges in administrative data linkage for research

Katie Harron, Chris Dibben, James Boyd … (2017)

Linkage of population-based administrative data is a valuable tool for combining detailed individual-level information from different sources for research. While not a substitute for classical studies based on primary data collection, analyses of linked administrative data can answer questions that require large sample sizes or detailed data on hard-to-reach populations, and generate evidence with a high level of external validity and applicability for policy making. There are unique challenges in the appropriate research use of linked administrative data, for example with respect to bias from linkage errors where records cannot be linked or are linked together incorrectly. For confidentiality and other reasons, the separation of data linkage processes and analysis of linked data is generally regarded as best practice. However, the ‘black box’ of data linkage can make it difficult for researchers to judge the reliability of the resulting linked data for their required purposes. This article aims to provide an overview of challenges in linking administrative data for research. We aim to increase understanding of the implications of (i) the data linkage environment and privacy preservation; (ii) the linkage process itself (including data preparation, and deterministic and probabilistic linkage methods) and (iii) linkage quality and potential bias in linked data. We draw on examples from a number of countries to illustrate a range of approaches for data linkage in different contexts.