It’s beyond question that we need data to combat the pandemic.
Every one of us has three lives: a public, a private, and a secret life. Before COVID-19, there were things we shared publicly, things we shared privately, and things that remained secret. Life in a pandemic forces us to reconsider those all. What used to be private and shared only with our physicians is now a matter of public interest. Even things we were used to keeping secret are being tracked in the name of the public good.
So while we undoubtedly need this information, this data, the questions of exactly how we should get it and use it, and who exactly this “we” should be, remain open. MyData offers an approach to answer these questions in concrete ways that preserve the basic, humane values that we all as human beings and citizens of this globe share.
The World Health Organisation (WHO) has defined three goals for their Strategic Preparedness and Response Plan: 1) Coordinate across regions to assess, respond to, and mitigate risks; 2) Improve country preparedness and response; and 3) Accelerate research and development. Cutting across all these goals is data: without data, none of this is possible. We need reliable, good-quality, vetted, data – and we need lots of it.
What is the data that’s needed? Most of it: personal data. We obviously need health data for diagnosing and gathering aggregate information on infections. We also need location data for contact-tracing in order to identify the exposed. And the need for data, and types of data needed, don’t stop there.
Personal data has increasingly significant social, economic, and practical value. Nevertheless, individuals have little or no control over how data about them and their activities is collected or being used. MyData is a human-centric approach to personal data that combines industry needs for data with strong digital human rights. This approach benefits individuals, organisations, and society at large.
For these benefits to become a reality, we need to adopt the principles outlined in the MyData Declaration:
The MyData movement, cited in the recent EU Data Strategy as “promising significant benefits to individuals, including to their health and wellness”, is facilitated by MyData Global, an award-winning international nonprofit. A considerable part of our activity goes to supporting organisations in creating different human-centric digital services bringing forth trust and understanding. We want to see a balanced and fair relationship build between the individual and organisations. Everyone wins.
We, the MyData community, are a group of entrepreneurs, innovators, developers, designers, activists, lawyers, ethicists, social scientists and more – from companies, public sector, civil society, and academia. We are currently working around the globe and around the clock for human-centric, effective, and ethical sharing of personal data to combat the COVID-19 pandemic. This is our promise: we will …
- CONNECT: facilitate and coordinate a platform where like-minded people, organisations, and initiatives can find each other, across the world – to enhance collaboration, avoid duplication of efforts
- BUILD: create technical solutions for effective data sharing and vetting for quality and reliability
- GUIDE: supply governance and ethics guidance and frameworks for human-centric data sharing and use according to the MyData principles
- ADVOCATE: influence upcoming regulation globally on how to incorporate the human-centric approach to data use and sharing
- THINK: publish on the societal implications of different kinds of data sharing and use
We’re not here to attack or point fingers at any actor or initiative. MyData Global organisation is also unable to supply funding or independent research data. We are here collaboratively to overcome the current crisis with the best toolkit we have: the human-centric approach to personal data.
Here are some examples of initiatives by and with our community members around the globe:
- COVID-19 MyData CommonS – a citizen-led legal and ethical data governance framework used for global modelling of COVID-19 and its effects (Switzerland)
- FeverMap – an app for ordinary people around the world to self-report their fever. Using biological population methods FeverMap can estimate the prevalence of COVID-19 infections in real-time and provide authorities with data that helps them fight the pandemic (Finland)
- Mylog14 app – a self-management app developed for the people under home-quarantine. The aim of the map is to help people to increase people’s motivation to complete successfully the period of two-week self isolation (Taiwan)
- VIA app – an app that allows all citizens to track their COVID-19 status and allow completely anonymous access to their geo-location and their COVID-19 infection status for governments, companies and fellow citizens (Germany)
- Quantifiedflu.org – a collaborative citizen science project that tries to address the question of whether our wearables can warn us when we’re getting sick (US, France)
- Personium – an app that allows users to cross check personal location log against anonymized data to determine COVID-19 exposure risk level. (Japan, Europe)
We’d like to invite you and your colleagues to get involved and contribute to the MyData community response to COVID-19:
- Engage with the community: Join the #coronadata channel in MyData Slack workspace to engage with the vibrant community of thinkers and doers.
- Keep up-to-date: Tune in for the latest developments in the MyData response to COVID-19 on Wednesdays at 3pm CET via Zoom & streamed on our Twitter. Catch up by checking out the recording, slides, and recap post from the first open meeting held 25 March.
- Share and learn about (your) COVID-19 apps: Join this Trello board to view and add information about different types apps in any phase of development.
- Join MyData Global: If you as an individual believe in these efforts and wish to support MyData, join MyData Global as an individual member, the membership fee model for individuals is “pay-what-you-want” and we welcome with enthusiasm all kinds of contributions! In addition, if you represent a company or an organisation, we need your support and want to collaborate! Join MyData Global as an organisational member and get in touch with general manager Teemu Ropponen, teemu at mydata dot org, to plan exactly how we can support each other through and during this time.
MyData: together, we can make it happen, and make it right!