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Data protection, data sharing and data ethics after the crisis

Data is key in the response to COVID-19. Everyone has become an armchair epidemiologist. It also generates a raft of data questions and issues.

There are huge gaps in the COVID-19 datasets: the real number of cases, the number of excess deaths. Those with symptoms are asked to self-isolate and only call NHS if their symptoms worsen, meaning that the volume of suspect cases is largely unknown. There has been more than one app developed to allows users to voluntarily self-report symptoms, along with some other demographic data; for example the app developed by King’s College London. This app went quickly up the download charts, but while the data from such apps will be of use in population studies, it has a number of flaws: false positives, potential for duplication, fragmented and piecemeal data. NHS England has recently begun to publish similar open data on the online symptom checker and NHS 111 calls; equivalent is not yet being published in Scotland.

There is a growing understanding of the need to be able to track symptoms, illness and perhaps individual’s movements to help control the spread of the disease. If you can’t measure it, you can’t manage it. The need to create a whole-society response is impacting people’s willingness to give up data they may previously have been reluctant to share. But what are the longer term impacts of this and how will it shape our consideration of data ethics?

Pulling together a rapid response to help vulnerable people requires data sharing between organisations, and the ICO have created a new hub with specific data protection guidance which addresses this and a number of other data protection implications. Another impact on the data protection and data sharing landscape is the emergency legislation in the shape of the Coronavirus Act 2020.

Companies are rapidly deploying tools and technologies to help facilitate home working, to deal with emerging issues and to start to pivot business models. Rightly, this digital transformation is proceeding at an unprecedented pace, but companies also need to take stock and ensure that they remain compliant from a data protection perspective. The recent lawsuit where Zoom is accused of illegally sharing personal data with Facebook may have given some companies pause for thought.

ScotlandIS have organised a webinar to cover some of these topics. Come and get insights from :

Sorcha Lorimer – Founder and CEO at Trace

David Goodbrand – Technology & Commercial Partner and Head of Data Privacy at Burness Paull

Olivia Gambelin – Founder and CEO at Ethical Intelligence It’s on Wednesday 8th April at 9:30am. Register here

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