From MyData and COVID-19 to MyData4Pandemics

 

About Us

The MyData4Pandemics is a new thematic group part of MyData that came to fruition with the advent of the shocks, changes, and challenges in society from the coronavirus. Below you can find our past activities, and ongoing vision for a human-centric data solution for facing the pandemic, and how you can help achieve it!

MyData-4-Pandemics is the follow up of several months of consultation within the MyData community.

 

OUR MISSION (why)

Our mission is to maximize the involvement of citizens during pandemics by enabling them to adapt their behaviour and to share their data in trust with authorities. By empowering citizens, we want to minimize the negative impacts of pandemics on the economy, health and education while preserving human rights such as data privacy, freedom of movement, equitable access to safe care….

This requires new approaches at political, scientific, technological and individual levels. 

OUR VISION (what)

There is no need to trade data privacy in the name of the good during cross border health threats. Existing and emerging technologies, based on the MyData Operators model, allow to develop and deploy individual centric services that support citizens and decision makers during crisis:

  • citizens are informed and able to adapt their behaviour because they understand the rationale and impact,
  • authorities have access to integrated personal data, willingly shared by individuals in support of the common good.

Today, all solutions – such as mobility restrictions, contact tracing, or equitable access to treatment – are problem centric and designed FOR the individual rather than BY the individual; they have shown their limitations and negative impacts. We call for decision makers and politicians to support development of individual centric approaches (BY the individuals) in support and complement to problem centric solutions.

While COVID-19 might be under control by Autumn 2021, experts, predict new outbreaks, more lethal, more contagious than SARS-CoV-2. The first priority in case of infectious disease outbreaks is medical countermeasures (MCM). The second priority is to develop non-pharmaceutical interventions (NPI). To ensure effective preparedness to pandemics we believe the 4 elements below need to be respected

  • Need for a coordinated multifactorial approach across Medical CounterMeasures (MCM) and non-pharmaceutical interventions (NPI) as they all rely on personal data. 
  • Need to empower individuals as responsible citizens as they want to understand what they need to do and why to adapt their behaviours. This requires consistent communication messages, adapted to different levels of education and different individual contexts; this can be delivered by emerging technologies such as virtual assistants linked to individuals’ data. 
  • Need to preserve EU citizen data privacy rights while ensuring access to these data, critically important to support definition and deployment of MCMs and NPIs during cross border outbreaks. Sharing and reusing of personal data must be compliant with GDPR; new approaches aligned with the emerging EU Data Governance Act should be supported.
  • Need to provide user friendly and sustainable technology solutions supporting a Personal Public and Private Partnership (4P) building not only on personal data but also on non-personal data from the private and public sectors. Effective and rapid transfer of data and information within a 4P require new technology solutions based on the principles of Data Intermediaries and Data Altruism

ACTION – PRACTICALLY: What do we propose?

Concretely, MyData-4-Pandemics proposes to develop Individual Centric Advisory and Warning Services on top of existing/emerging MyData operators, building on MyData principles.

2 use cases:

A set of technology services based on MyData operators

We need you! Get involved.

Our community has experts of varying backgrounds, interests, and degrees of experience. We aim to support and facilitate an interdisciplinary and safe space where everyone can share their thoughts, views, and ideas when working towards our vision of human-centric pandemic data-management. In particular, we are looking for people with the following skills, willingness to participate, and motivation to donate their time doing:

  • users (citizen, authorities, scientist) – input on the value and need for a technology solution
    • citizen – everyday people (that means you!) regardless of where you are from, what your education level is, the pandemic is something we all have a stake in, so have your say
    • business – networking with businesses and governments, connecting gatekeepers with MyData4Pandemics, and exploring innovative business models around personal data platforms
    • legal – knowledge and interest in governing factors of data, policy-related shaping of a human-centric platform
    • society – participating as an end-user and giving feedback during user interviews, documenting and engaging with prototypes and during design sessions
  • communication – disseminating and promoting material on social media and in the Slack channel, finding and writing funding proposals, and helping organize pandemic-related seminars
  • technical – interoperability? data architecture? components of solutions already in place

Join us in working towards a human-centric platform for managing the pandemic

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@mydata.org, to plan exactly how we can support each other through and during this time.

Our MyData Slack channel is open for all interested persons to join

How to join our Slack channel:

  1. Join MyData Global Slack workspace at mydata.org/slack
  2. In Slack, find our group by selecting the “Channels” option in the left hand column which will open a browser menu. Search for our channel by typing in “#mydata-4-pandemics” and then selecting “Join Channel”.
    More detailed instructions can be found here: wikihow.com/Join-a-Channel-on-Slack
  3. Don’t forget to introduce yourself to the Pandemics community!

Or send us an email to pandemics[at]mydata.org

Have any feedback? Share your thoughts with us!

If you would like to know more about what we are doing, or would like to give feedback about a particular activity, please fill out the form and someone from the MyData4Pandemics thematic leadership group will get back to you. Anonymous feedback is also possible. All feedback is available to the MyData Global staff as well as the MyData4Pandemics leadership.

  • Please leave here your email, if you'd like us to contact you for further information
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Rewatch the MyData vs. COVID-19 calls to #MakeItHappen and #MakeItRight

The series of calls took place between 25 March and 4 June 2020. Altogether, 8 calls were organised with over 30 initiatives presented.

MyData vs. COVID-19 call #7

MyData vs. COVID-19 call #8

MyData vs. COVID-19 call #5

MyData vs. COVID-19 call #6

MyData vs. COVID-19 call #3

MyData vs. COVID-19 call #4

MyData vs. COVID-19 call #1

MyData vs. COVID-19 call #2

The questions 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.

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.

 

The series of the calls took place between 25 March and 4 June. Altogether, 8 calls were organised with over 30 initiatives presented. We are taking break for summer, but you can check the recaps and recordings below and join mydata.org/slack #coronadata channel for further discussions. 

Check below for resources:

  • Recaps from the calls:
    • MyData vs COVID-19 Vol.5: Smooth Recovery-Immunity Passports (22 April) here
    • MyData vs COVID-19 Vol.4: Contact Tracing (15 April) here
    • MyData vs COVID-19 Vol.3 (8 April) here
    • MyData vs COVID-19 Vol.2 (1 April) here
    • MyData vs COVID-19 Vol.1 (25 March) here