This panel can also be viewed on YouTube here.
Extracting Harmful Inferences: Reframing Data Protection to Promote Healthcare
Alexander Bernier
McGill University
Data Flows and Information Sharing: Why Is COVID-19 Different?
Felix Anyiam
University of Port Harcourt
Lost in Virtual Space: The Art of Assembly in the Age of COVID
Gloria Benedikt
International Institute for Applied Systems Analysis
COVID-19 in Sickness and in Health: Course Insights on Data Science and Citizen Science
Ronit Purian
Tel Aviv University
Links to references here.
Text Mining for Distant Reading: Insights into COVID-19
Natalie Meyers
University of Notre Dame duc Lac
Links to references here.
Comments 10
Welcome to the CEDS MiniForum session on Health Data and Digital Society, where we will explore the response to the pandemic by several different communities. Alexander Bernier looks at legal frameworks to share data and protect privacy; Felix Anyiam describes the challenges to researchers who lack robust data; Gloria Benedikt explains why virtual spaces cannot replace human connection; Ronit Purian provides an overview of how her students are learning to design responsive and inclusive smart cities that plan for pandemic and protest; and Natalie Meyers introduces a new tool in the fight against COVID-19, CORD19.
Please leave your comments and questions, and let us know what data extraction issues YOU THINK the global data research community should prioritize by taking our poll: https://forms.gle/Mjt1CpGkgLyRtUXY9
In response to the presentation, #Extracting Harmful Inferences: Reframing Data Protection to Promote Healthcare, COVID-19 has shown that our global universe is not necessarily as far apart from one another as we initially thought, with the rate of spread unimaginable. One can begin to think globally also in terms of data policy generation. It is time to begin to recommend a harmonization strategy for data protection and ethics that cuts across all countries globally, and not necessarily by country-specific, as all key data generation platforms are almost similar across nations. Like we have the United Nations (UN), we can also have the United Data (UD), with the goal to creating a global platform for the harmonization of the privacy and protection of data, to enhance global (and not individual) research. Such policy if on ground would properly have enhanced the fight against COVID-19.
Hi Felix,
Thank you for your insightful comment! Building international consensus regarding the content and enforcement of data protection and data privacy law is an important step towards fostering efficient international cooperation in data-driven research. Already, a limited number of standard-setting bodies and international organizations are involved in the promotion of ethical and legal harmonization in data stewardship, these include sector-specific bodies such as the Global Alliance for Genomics and Health, and entities with a broader mandate such as the Organisation for Economic Co-operation and Development (OECD).
A second approach to ensuring meaningful cooperation in data sharing and data analysis, in spite of local ethical and legal variation in data privacy regulations, is “legal interoperability.” Just as interoperability in the technological sphere intends to foster meaningful interaction between computer systems despite their lack of harmonization, legal interoperability attempts to foster compatibility between different legal spheres without requiring both to achieve consensus nor standardization. Paths to achieving legal interoperability can include solutions agreed to between private-sector actors absent a central public strategy, such as the use of contracts and other legal devices to hold data to a common standard of protection across jurisdictions. Legal interoperability can also be achieved by using common principles across jurisdictions to regulate the use of data, rather than differing formal obligations that can be difficult to ensure consistent compliance with when operating across multiple countries.
A question for all panelists: how has your culture responded to the COVID crisis? What has surprised you?
Nice
Hi Pradeep-
What did you find to be nice, specifically?
According to me covid is not different it’s one of a kind and it’s d*rate is less compare other known viruses
Hi Parihar-
So how should the global health and data communities treat COVID, if it is one of a kind?
Thanks to all panelists for nice presentation.
Covid 19 data is really very important for research and development. The data exchange may help to boost the medical research and find solution on covid 19 .
Thanks everyone for your talks. Here in New Zealand we have come to appreciate the importance of data privacy this week as two opposition party members just leaked the details of covid patients in NZ, all of whom are recent returnees to the country in managed isolation (https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12346280). This leak was a big deal because we have no active community transmission, and there is the threat of stigma for these people if their names were released.
I loved Gloria’s piece showing how central human connection is for all of us. Thank you!