Pandemics, privacy, and public health research

Bernier, Alexander; Knoppers, Bartha Maria

doi:10.17269/s41997-020-00368-5

Cited by 10 publications

(9 citation statements)

References 6 publications

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“…The overall subtlety of changes in available data and its specificity might be a symptom of underlying system barriers, in particular in relation to the collection and reporting of disaggregated data [ 58 ]. Researchers in the Canadian context have called attention to data management issues arising from unharmonized privacy laws, public/private data custodianship, and obstacles to the reuse of data for research [ 59 ]. The collection of race-based data in Canada is fragmented [ 60 ], and a pan-Canadian standard was proposed only in July 2020 [ 61 ].…”

Section: Discussionmentioning

confidence: 99%

Exploring Changes to the Actionability of COVID-19 Dashboards Over the Course of 2020 in the Canadian Context: Descriptive Assessment and Expert Appraisal Study

Barbazza¹,

Ivanković²,

Wang³

et al. 2021

J Med Internet Res

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Background Public web-based COVID-19 dashboards are in use worldwide to communicate pandemic-related information. Actionability of dashboards, as a predictor of their potential use for data-driven decision-making, was assessed in a global study during the early stages of the pandemic. It revealed a widespread lack of features needed to support actionability. In view of the inherently dynamic nature of dashboards and their unprecedented speed of creation, the evolution of dashboards and changes to their actionability merit exploration. Objective We aimed to explore how COVID-19 dashboards evolved in the Canadian context during 2020 and whether the presence of actionability features changed over time. Methods We conducted a descriptive assessment of a pan-Canadian sample of COVID-19 dashboards (N=26), followed by an appraisal of changes to their actionability by a panel of expert scorers (N=8). Scorers assessed the dashboards at two points in time, July and November 2020, using an assessment tool informed by communication theory and health care performance intelligence. Applying the nominal group technique, scorers were grouped in panels of three, and evaluated the presence of the seven defined features of highly actionable dashboards at each time point. Results Improvements had been made to the dashboards over time. These predominantly involved data provision (specificity of geographic breakdowns, range of indicators reported, and explanations of data sources or calculations) and advancements enabled by the technologies employed (customization of time trends and interactive or visual chart elements). Further improvements in actionability were noted especially in features involving local-level data provision, time-trend reporting, and indicator management. No improvements were found in communicative elements (clarity of purpose and audience), while the use of storytelling techniques to narrate trends remained largely absent from the dashboards. Conclusions Improvements to COVID-19 dashboards in the Canadian context during 2020 were seen mostly in data availability and dashboard technology. Further improving the actionability of dashboards for public reporting will require attention to both technical and organizational aspects of dashboard development. Such efforts would include better skill-mixing across disciplines, continued investment in data standards, and clearer mandates for their developers to ensure accountability and the development of purpose-driven dashboards.

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Section: Discussionmentioning

confidence: 99%

Exploring Changes to the Actionability of COVID-19 Dashboards Over the Course of 2020 in the Canadian Context: Descriptive Assessment and Expert Appraisal Study

Barbazza¹,

Ivanković²,

Wang³

et al. 2021

J Med Internet Res

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show abstract

“…15 Perhaps a more dynamic legal catalyst is needed for such systemic change-one that will focus beyond antithetical dualism such as privacy and autonomy and restructure the foundations of the freedom of biomedical research as an expression of the universal human right of everyone to benefit from science and its applications. [16][17][18]…”

Section: Discussionmentioning

confidence: 99%

Longitudinal Health Studies: Secondary Uses Serving the Future

Bernier

Knoppers

2021

Biopreservation and Biobanking

Self Cite

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Our research compares the ethical and institutional conditions that govern the sharing and secondary use of longitudinal population health data from multiple cohorts. The data use and data sharing conditions applicable to 27 population health cohorts were assessed. This assessment was performed in consulting the informed consent materials and institutional policies applicable to the use of data. Descriptions drawn from the research ethics consent materials were refined through dialog with the institutional staff responsible for overseeing access to data, where possible. Our results demonstrate that data of longitudinal population health cohorts assessed can generally be shared and used for secondary purposes. However, the purposes of secondary use and the preconditions applicable thereto are highly variable. Heterogeneous use conditions can also impede the storage of legacy research data and the pooling thereof for the purpose of common reuse.

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“…They focused on regulations because of ethical requirements; however, they only discussed rules and regulations. The guidelines for data protection of Covid-19 patient have been discussed by Bernier et al [ 39 ]. They focus on reforms and guidelines for the data protection of Covid-19 patients.…”

Section: Related Workmentioning

confidence: 99%

Achieving data privacy for decision support systems in times of massive data sharing

et al. 2022

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The world is suffering from a new pandemic of Covid-19 that is affecting human lives. The collection of records for Covid-19 patients is necessary to tackle that situation. The decision support systems (DSS) are used to gather that records. The researchers access the patient’s data through DSS and perform predictions on the severity and effect of the Covid-19 disease; in contrast, unauthorized users can also access the data for malicious purposes. For that reason, it is a challenging task to protect Covid-19 patient data. In this paper, we proposed a new technique for protecting Covid-19 patients’ data. The proposed model consists of two folds. Firstly, Blowfish encryption uses to encrypt the identity attributes. Secondly, it uses Pseudonymization to mask identity and quasi-attributes, then all the data links with one another, such as the encrypted, masked, sensitive, and non-sensitive attributes. In this way, the data becomes more secure from unauthorized access.

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Pandemics, privacy, and public health research

Cited by 10 publications

References 6 publications

Exploring Changes to the Actionability of COVID-19 Dashboards Over the Course of 2020 in the Canadian Context: Descriptive Assessment and Expert Appraisal Study

Exploring Changes to the Actionability of COVID-19 Dashboards Over the Course of 2020 in the Canadian Context: Descriptive Assessment and Expert Appraisal Study

Longitudinal Health Studies: Secondary Uses Serving the Future

Achieving data privacy for decision support systems in times of massive data sharing

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