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aNewGovernance

aNG

Brussels-based aNewGovernance international association brings together public bodies, associations, academics, start-ups and corporates, in total 250 organisations from 53 countries. This initiative is accompanying the shift to fair data, and especially the European Data Strategy and the development of Data Spaces. The association aim is to help build those Sectoral Data Spaces in their Governance and Personal Data dimensions, as well as the Personal Cross-Sectoral Data Space.

Lobbying Activity

Meeting with Arto Virtanen (Cabinet of Commissioner Jutta Urpilainen)

19 Nov 2021 · Digitalisation; fair data economy; investment in Africa

Meeting with Christiane Canenbley (Cabinet of Executive Vice-President Margrethe Vestager), Werner Stengg (Cabinet of Executive Vice-President Margrethe Vestager)

26 Apr 2021 · Data Governance Act

Meeting with Arto Virtanen (Cabinet of Commissioner Jutta Urpilainen)

9 Apr 2021 · Digital transformation and access to electricity in Africa.

Meeting with Maria-Myrto Kanellopoulou (Cabinet of Vice-President Margaritis Schinas)

7 Apr 2021 · Data economy

Response to Legislative framework for the governance of common European data spaces

8 Feb 2021

aNewGovernance welcomes the publication of the Data Governance Act. Following on our response to the overall EU Data Strategy, we support the European Commission’s actions encouraging data sharing and reuse, thus unlocking the yet unexploited financial and societal value of data. Building on our previous contributions, we would like to precise the following points: 1. Being an association bringing together members from different continents around the data human-centricity concept, we are encouraging cross-border data sharing as exemplified by our participation in WTO and WEF work. We therefore welcome the fact that data localisation provisions from the draft law have been removed. 2. We applaud the introduction of the concept of Data Altruism, which will have positive impact on areas like research, but also fair AI. However, since a thorough governance framework is foreseen, we don’t understand why there must be a divide between public and altruist data. We fear it may discourage people from contributing to data altruism, and reduce both learning curve. 3. On the important subject of Data Intermediaries, we support the objective of creating truly independent players. We believe it is the only way to guarantee the deployment of a true citizen-owned Personal Data Space, without precluding its nature. More generally, we believe the concentration of data within some actors perimeter -be they gate keepers or specialized large corporates from a specific sector- will actually hamper data sharing and will slow down its citizen adoption. We believe this data sharing architecture with neutral data intermediaries should be applied to all data sharing: now it seems there are different regimes if public data is shared or for data altruism, different architectures may fragment the market and infrastructure. On the other hand, data intermediaries can have specific rules according to the nature of the data sharing thus ensuring the Commission’s will to for instance not monetize altruistic data. 4. We encourage the Commission to develop work around common governance, standards and interoperability across the whole continuum of the data infrastructure, including cloud service providers.
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Response to A European Health Data Space

1 Feb 2021

aNewGovernance applauds the European Commission’s intention to create the European Health Data Space. The COVID-19 pandemic has the potential to be the catalyst to a long-awaited bold human-centered shift in the way we manage our Health, truly moving from sick-care to health-care (see document attached). There is an obvious need for a common European data space, which shall promote better health outcomes throughout the Union, better collaboration, better research. But we must not miss the opportunity to review our approach to Health. Simply digitizing current flows would be a mistake. This bold approach will enable us to deliver better life style to our fellow citizen, while also tackling the demographic time-bomb due to ageing of our population and the induced budget issues. It will also give a competitive advantage to our companies, incumbents and start-ups. With those objectives in mind, the issues to be tackled are the following: 1. Share health data at local, regional, national and European data to provide healthcare services, sanitary surveillance, research and innovation, policymaking and regulatory activities. 2. Define a GDPR and European Values based privacy-conscious, transparent, fair and trusted data sharing infrastructure 3. Establish an appropriate legal and governance framework, compatible with other data spaces and the personal data spaces described in the European Data Strategy (Mobility or Air Quality data can provide valuable information to people with COPD or Handicap issues, for instance). 4. Ensure a holistic approach centred on the individual. This starts by aligning Personal Data and Industrial Data principles. 5. Enable citizen empowerment. Not just access by individuals of their own health data, but truly enable them to be actors of their (physical and mental) health. This starts by a reflexion on how to aggregate patient-generated and healthcare-system-generated data. 6. Facilitate development and scale-up of eHealth solutions through simplification of regulations. 7. This starts with adaptation of the incentivisation/reimbursement system 8. Such shift shall also create a framework enabling development of innovative technology solution, including Artificial Intelligence-led models, bringing into the loop both healthcare professionals and patients.
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