An approach for fighting COVID-19 and beyond: MyData
[Join us on MyData vs COVID-19 calls every Wednesday 15:00-16:00 CEST. For details, join mydata.org/slack #coronadata channel.]
The whole world is looking for ways to curb and combat COVID-19: vaccines are being developed, medications are being tested and personal data-based applications to track and isolate the suspected cases are being built. The digital solutions introduced in South Korea and Singapore are being looked at by other governments planning their exit strategies from the lockdown. Contract tracking apps proved to be generally effective in Asia to fight COVID-19 without putting the societies and economies on hold.
At the same time, the discussions on what kind and how much of data the governments should have about us to be able to fight COVID-19 have surfaced. After years of fighting for privacy and control over the personal data, the threat of sacrificing it for the fight against COVID-19 is real.
In his article for Financial Times, Yuval Noah Harari argues that:
“Asking people to choose between privacy and health is, in fact, the very root of the problem. Because this is a false choice. We can and should enjoy both privacy and health. We can choose to protect our health and stop the coronavirus epidemic not by instituting totalitarian surveillance regimes, but rather by empowering citizens.”
– Yuval Noah Harari, a historian, philosopher and best-selling author
Harari also reminds us of two things:
- The tech solutions introduced today will most likely stay with us longer than we think.
- There is an alternative to surveillance and control, and this alternative is based on trust – trust in science and trust towards the government.
This brings us to MyData – a human-centric approach to personal data, where the individual is empowered to take control over their data and where this data is shared using ethically sound technologies providing better services. Trust is a key concept for MyData – ethical data sharing is based on transparency, which creates trust.
The initiatives based on the MyData principles are booming in response to COVID-19. MyData community members are actively discussing and evaluating the different data-driven approaches to combat COVID-19 in #coronadata Slack channel, which has become a great source of curated information to make sense of the, to be frank, quite fragmented and noisy landscape of news and approaches appearing from around the world. The weekly MyData vs COVID-19 calls organised by MyData Global have gathered each over sixty participants from all over the world to present, discuss and get inspired by the numerous projects. Projects range from COVID-19 MyData governance framework to the Taiwanese self-management app MyLog14 to the attempts to develop the I’m Immune Certificate that will allow people to leave their homes and return to work. The symptoms and contact tracking apps are the most popular.
During the last call on 1 April 2020, the following cases were presented:
- WeTrace – 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 (Switzerland).
- PersoniumTrails – an app that allows users to cross-check personal location log against anonymized data to determine COVID-19 exposure risk level. (Japan, Europe).
- 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).
- QuantifiedFlu – 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).
The MyData vs. COVID-19 calls are attracting people looking for solutions and inspiration.
COVID-19 is challenging strength of our relationships and of our mutual trust. Since the beginning of a crisis, I have been repeatedly asking myself a question: How can I help? and MyData offered a perfect place to do so (as always)! It was inspiring to see people from all over the world coming together to share their work and genuinely willing to help each other. #Bee1World -Kristina Yasuda, MyData Global board member
Also, wider alliances to provide the data management framework for the applications are being established, like the German #GesundZusammen, >which advocates for controlling infection without giving up on data protection.
The buzz is great. But… Why is MyData a good approach to fight the crisis?
- MyData is based on the principles of ethical data sharing and citizen empowerment. To fight COVID-19 we need good quality data and we need lots of it – people will be more eager to share their data only with the trusted parties, whose applications are transparent, secure and respect the right for privacy. In return, the analysis done based on the data collected can empower individuals to make better choices for protecting their, and their peers’ health.
- MyData Global advocates for data interoperability, which would help the overwhelmed health and social authorities. They would be able to coordinate better the exchange of information about the patient by collecting their health record, employment history and other information for e.g. payment of the social benefits.
- Solutions based on MyData principles could be useful also after the worst is over. What might be allowed under the emergency state, will not be accepted in the long run. We know now that fighting COVID-19 will take months and we are here for the marathon. This means we need solutions that comply with human rights and data protection regulations. MyData-based solutions can also be used for other purposes than only COVID-19, and help create a more just, fair and prosperous digital society.
- By the wide intake of the solutions and high participation, citizens will be empowered by the fact that thanks to the MyData-based solutions they are able to feed in, with their data and the insights from them, to the policymaking. This could increase the trust in the authorities.
In his blog published on Sunday 5 April, the Finnish Minister of Transport and Communications Timo Harakka said that for the tracking applications to be effective, they must be used by at least 60% of the population. For this, the solution must be trustworthy and secure.
“Only with the consent of the citizens will we be able to move forward in a very difficult situation in society – without compromising privacy and trust.” – Timo Harakka, the Finnish Minister of Transport and Communications
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 second open meeting held 1 April.
- Share and learn about (your) COVID-19 apps: Join this Trello board to view and add information about different types of 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.
Read our previous blog post: MYDATA VS. COVID-19
MyData: together, we can make it happen, and make it right!
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