MyData4Pandemics – learning from COVID-19

About Us

The MyData4Pandemics is a MyData thematic group that came to fruition with the advent of the shocks, changes, and challenges in society from the coronavirus pandemics. Citizens have been the forgotten stakeholders in this crisis; we need individual-centric data solutions, driven by MyData principles to be better armed for current and forthcoming outbreaks.

Highlights

M4P presentation [ref] to the Webinar EU4Health Work Programme 2022: targeted stakeholder consultation outcome (Crisis Preparedness work stream), September 10, 2021 [ref]
M4P is happy to be a member of the GHPC initiative [ref] since September 17, 2021. We believe that GHPC provides a unique, interoperable platform needed to ensure citizens can transform this information into digital credentials reusable across borders as a “go through gate” pass before an outbreak becomes a pandemic.
Individual Centric Advisory Services (ICAWAS): Project abstract. April 2021 [ref]

Video from July 2020

“Honorary mention in The SITRA Fair Health Data Challenge”

MyData4Pandemic’s proposed ICAWAS solution built upon the 4P model (People-Public-Private Partnership) was awarded an honourable mention in Sitra’s “Fair Health Data Challenge” on June 9th, 2021. Press release here. The judges remarked:

“In complex and difficult-to-manage crises, it is easy to forget the individual’s responsibility and perspective. This solution is exceptional in making them the starting point of all planning activities.”

Our Objective

There is no need to trade data privacy in the name of the good during cross-border health threats; decision-makers should leverage emerging human-centric solutions to meet pandemic data needs while respecting citizens’ rights.

Individuals who are empowered as responsible citizens, minimize the negative impacts of pandemics on the economy, health and education all while preserving human rights such as data privacy, freedom of movement, and equitable access to healthcare.

Today, all solutions – such as mobility restrictions, contact tracing, or equitable access to treatment – are problem centric, siloed and designed FOR the individual rather than BY the individual; their limitations and negative impacts on human rights are apparent. We call for decision-makers and politicians to support the development of individual-centric approaches to support and complement to pandemic-related challenges.
Existing and emerging solutions, based on the MyData Operators reference model, allow us to develop and deploy these individual-centric services where:

citizens are informed and able to adapt their behaviour because they understand the rationale and impact
citizens are in control of their data and they can decide to share data, in trust, with authorities
authorities and decision-makers have access to higher quality, integrated and up-to-date personal data, willingly shared by individuals in support of the common good

Plan of Action: What do we propose?

Concretely, MyData4Pandemics proposes to develop an individual-centric advisory and warning service complementing the existing and emerging MyData Operators approach and building on MyData principles.

2 use cases

Mobility: Responsible freedom of movement during pandemics

Post Marketing Surveillance: Increased safety and try in mass vaccination programs

A set of technology services based on MyData operators

The Needs for Data Commons

MyData4Pandemics overall proposed solution

Planned deployment steps and stages

Available technology components

External Communication

Conferences

M4P presentation [ref] to the Webinar EU4Health Work Programme 2022: targeted stakeholder consultation outcome (Crisis Preparedness work stream), September 10, 2021 [ref]
2021 Internet Data Privacy Colloquium, February 2021.
Electronic Contact Tracing in Epidemics – and Privacy Concerns [ ref]
MyData Online conference, December 2020.
Approach to quality data in pandemics [ref]
MyData Online conference, December 2020.
Evolving Trust in Data Sharing, European Connected Health Alliance [ref]
EFMI – MIMTT 2020: 2nd EU-China Health Summit on Medical Innovation, Medical Informatics, Medical Imaging and Medical Technology Transfer, October 2020.
MyData for COVID-19 [ref]
ScanBalt Digital Forum 2020, September 2020.
How to optimize prevention while maximizing mobility in COVID-19 [ ref]

Position Papers & Blogs

M4P is happy to be a member of the GHPC initiative [ref] since September 17, 2021. We believe that GHPC provides a unique, interoperable platform needed to ensure citizens can transform this information into digital credentials reusable across borders as a “go through gate” pass before an outbreak becomes a pandemic.M4P is happy to comment on the EU4Health initiative, focusing on pandemic preparedness as one of its 3 pillars [ref]
Individual Centric Advisory Services (ICAWAS): Project abstract. April 2021 [ref]
Feedback to WHO on the Release Candidate 1 of the Smart Vaccination Certificate specification. April 2021 [ref]
Contribution to the Independent Panel to the WHO, for Pandemic Preparedness. March 2021 [ref]
Position paper in answer to the consultation to the European Health Emergency Preparedness and Response Authority (HERA) – Inception Impact Assessment, February 2021 [ref]
The citizen: the forgotten stakeholder in pandemic management, January 2021 [ref]
MyData Global Blog Post –
The MyData Commons Prototype : COVID-19 as a Driver for Action and Change, June 2020 [ref]

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 a human-centric pandemic data-management solution. In particular, we are looking for people with the following skills, willingness to participate, and motivation to donate their time working on:

users requirements (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 development (prototyping) – all persons with technical skills are appreciated

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:

Join MyData Global Slack workspace at mydata.org/slack
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
Don’t forget to introduce yourself to the Pandemics community!

You can send us an email at pandemics[at]mydata.org or follow up on Twitter @mydatapandemics

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.