Data Solidarity Project

Data Solidarity Project

(Scroll down to read about the team, news updates, and resources)

At present, the risks and benefits of digital practices are not distributed fairly. Vast power asymmetries exist and are reinforced at both the regional and the global level. Addressing these challenges and inequalities requires an approach that goes beyond merely giving people more control over their own data. Data Solidarity is an approach to data governance which aims to increase collective control, oversight, and ownership of digital data and resources alongside respect for individual autonomy. It seeks to achieve a more equitable sharing of benefits and risks emerging from digital practices.

The Data Solidarity Team at the University of Vienna conducts interdisciplinary research on the theory and practical application of data solidarity, advocates for policies and practices that promote solidarity throughout the digital ecosystem, and engages with stakeholders at all levels to promote the concept of solidarity in data governance.

In October 2023, the Data Solidarity Team launched the Public VaLUe Assessment TOol (PLUTO) - an online tool to measure the public value of data use. PLUTO can be used by anyone, such as  representatives of businesses or public bodies wanting to know how much public value specific uses of data may create, or patients and other citizens who are asked to share their data to be used for specific purposes.

Since May 2024, the Team has been collaborating with the Digital Transformations for Health (DTH) Lab to advance the principles of data solidarity in digital health. DTH Lab is a global consortium of partners working to drive implementation of The Lancet and Financial Times Commission on Governing Health Futures 2030’s call for digital health to be driven by public purpose, and not for profit.

Team Members

Barbara Prainsack

Barbara Prainsack is a professor and Head of Department at the Department of Political Science at the University Vienna, where she also directs the interdisciplinary Research Platform “Governance of Digital Practices”. Her work explores the social, ethical, and regulatory dimensions of genetic and data-driven practices and technologies in biomedicine and forensics. She holds honorary positions at the School of Social and Political Sciences at the University of Sydney, at the Department of Global Health & Social Medicine at King’s College London, at the Centre de recherche en éthique (CRE), University of Montreal, Canada, and at the Centre for Health, Law, and Emerging Technologies (HeLEX) at the University of Oxford. Her latest books are: Personalized Medicine: Empowered Patients in the 21st Century? (New York University Press, 2017), and The Pandemic Within: Policy Making for a Better World (with H. Wagenaar, Policy Press, 2021). Barbara is also involved in policy-related work, e.g. as a member of the Austrian National Bioethics Commission, and as Chair of the European Group on Ethics in Science and New Technologies. She is a member of the British Royal Academy of Arts, and an elected foreign member of the Royal Danish Academy of Sciences and Letters as well as the German National Academy of Science and Engineering (acatech).

Connor Hogan

Connor Hogan earned his Master of Science in Politics from University College Dublin (2021), where he also tutored in Political Theory and Comparative Politics. He holds a Bachelor’s degree in Politics, Philosophy and Economics from Queen’s University, Belfast (2017). During his undergraduate studies, he spent two semesters at the University of Stockholm. For his master’s thesis, he explored how systems of labour law develop in extreme physical environments, to assess how the rights of future workers may be protected in outer space. He has also written on issues of citizenship and UK-EU space policy. 

As a researcher with the Data Solidarity Project, Connor is focusing on developing the concept of public value of data use, and on applying the DS framework to real-world examples of data-driven entities in the field of health. He also works on the further development and application of PLUTO, both within and outside of the health field.

Seliem El-Sayed

Seliem El-Sayed earned his Master’s degree in International Public Management and Political Science from Institut d’études politiques de Paris (SciencesPo) and Freie Universität Berlin (2020), partly funded by a scholarship of the Franco-German University. He holds a Bachelor’s degree from University College Maastricht in Liberal Arts and Sciences (2017) with a concentration on International Relations and Law. During his undergraduate studies, he spent a trimester at the University of California (Santa Cruz) doing coursework in Critical Legal Studies and Constitutional Law. For his graduate thesis he evaluated the German litigation framework’s ability to safeguard citizens from algorithmic discrimination.

In the course of his doctoral dissertation entitled “Reframing Digital Data Governance for Public Value”, Seliem discusses the shortcomings of dominant data governance frameworks and how these shortcomings can be addressed through a focus on public value and data solidarity.

News

PLUTO demonstration at UN World Data Forum 2024

On Thursday (14 November), Connor Hogan and Seliem El-Sayed will host a one-hour session at the UN World Data Forum, in Medellín, Colombia, titled: Data Solidarity and PLUTO: Introducing a Tool for Bringing Public Value to Data Governance. The session will commence with a short presentation on data solidarity and PLUTO. This will be followed by an interactive session in which participants will use PLUTO themselves, based on real-world scenarios. Following this, there will be an open discussion to explore the participants’ experiences with the tool, make suggestions, and investigate its practical application in their own sectors. The session is open to all stakeholders who use data or who are interested in the public value of data use, including government, public and private bodies, philanthropic organisations and researchers. Attendees will not only learn how to use PLUTO, but how to actively contribute to the creation and maintenance of public value within their respective domains.

When: Thursday, 14 November 2024, 16:15 – 17:15 EST (22:15 – 23:15 CET)
Where: UN World Data Forum 2024, Medellín, Colombia (For virtual participation visit: https://loom.ly/o533014)

Presenters: Connor Hogan & Seliem El-Sayed

Organiser: UN World Data Forum

 

Virtual Panel: Data Solidarity: Key Concepts and Future Directions

Abstract: How can a solidarity-based approach to data governance help to maximise the health benefits of data whilst protecting people from harm? To find out, join us for an engaging virtual panel discussion on data solidarity, organised by the Digital Transformations for Health Lab and the Data Solidarity Team at the University of Vienna. This event will focus on the newly published Data Solidarity Glossary which seeks to clarify data solidarity and other relevant concepts. Following an introductory presentation, a diverse intergenerational panel will share insights on the benefits and challenges of applying data solidarity in the health sector. Participants will have an opportunity to explore the Data Solidarity Glossary and take part in an interactive Q&A

When: Thursday, 7 November 2024, 10:00-11:00 (CET)
Where: Online via Zoom (register here)

Speakers: Dr Barbara Prainsack (Department of Political Science, University of Vienna); Ananya Choyal (Digital Transformations for Health Lab); Eric Sutherland (OECD); Dr Ademola Ade-Serrano (PharmAccess Kenya)
Moderation: Connor Hogan (Department of Political Science, University of Vienna)

 

Online workshop: Mitigating Harm in the Digital Era, Wednesday 27 November 2024

Whenever data is used – even when there is great benefit for people and communities – there is a risk that individuals or groups are harmed. While it is important to reduce risks as much as possible, it is also important to acknowledge that harms might still occur – and that people who have experienced harm receive adequate support and compensation. Today, people and communities who are disadvantaged because of data use are often left without such support, for various reasons: Harm can occur without any laws being broken, or without the harmed party being able to pinpoint who exactly caused the harm. The more data is shared and linked, and the less transparent these processes are, the more difficult it becomes for people to identify what or who is responsible for the harm they experienced. Finally, some people do not have access to legal remedies because they lack the social and economic resources to use them. This virtual workshop will give an overview of the concept of harm mitigation, and bring together a variety of experts in data governance and policy to discuss specific approaches, such as the establishment of Harm Mitigation Bodies. The programme for the event is available here.

When: Wednesday 27 November 2024, 14:00-16:00 (CET)
Where: Online via Zoom. Please contact Connor Hogan at connor.hogan@univie.ac.at if you are interested in attending.

 

Data Solidarity Glossary Launched at European Health Forum Gastein

On Friday morning, Professor Barbara Prainsack, Professor Ilona Kickbusch, and Seliem El-Sayed launched the Data Solidarity Glossary at a special breakfast event during the European Health Forum Gastein (EHFG). Following opening words from Professor Kickbusch, Professor Prainsack delivered a brief presentation outlining the core principles of the data solidarity framework, its necessity, and upcoming developments. Seliem El-Sayed followed with a demonstration of PLUTO (Public Value Assessment Tool), which provides a structured approach to evaluating the public value of data use. After the presentations, an open discussion took place, during which several topics were raised, including: the definition of public value, managing risks in health data governance, benefit sharing and balancing privacy concerns.

The Data Solidarity Glossary is now available online! It is intended to promote a better understanding of data solidarity and its relationship to other governance approaches. It starts with a clarification of key terms that are central to the data solidarity approach. It then moves on to a discussion of concepts that are related to data solidarity, both in the sense that they refer to related practices, or in that they may be confused with data solidarity. The discussion of related concepts focuses both on a basic definition of these concepts and on clarifying their relation to data solidarity.

 

Publication: Data Solidarity Glossary

Barbara Prainsack and co-author Ilona Kickbusch, have published the Data Solidarity Glossary. The glossary is intended to promote a better understanding of data solidarity and its relationship to other governance approaches. It starts with a clarification of key terms that are central to the data solidarity approach. It then moves on to a discussion of concepts that are related to data solidarity, both in the sense that they refer to related practices, or in that they may be confused with data solidarity. The discussion of related concepts focuses both on a basic definition of these concepts and on clarifying their relation to data solidarity.

 

Publication: A new public health approach to data: why we need data solidarity

In addition to the Data Solidarity Glossary, Barbara Prainsack and co-author Ilona Kickbusch have published an article on the public value of data use and the concept of data solidarity in the British Medical Journal (BMJ).

Prainsack & Kickbusch, BMJ 2024; 386 doi: https://doi.org/10.1136/bmj.q2076 (Published 23 September 2024)

 

Interview: Using data for the greater good

Barbara Prainsack was interviewed on Data Solidarity by Healthy Europe (10.09.2024). Ahead of the European Health Forum in Gastein later this month, she explains why we should use data for the good of society as a whole, and what form this should take.

 

Plenary: Democracy at work - the European Health Data Space from concept to reality

Barbara Prainsack will speak at the European Health Forum in Gastein. This will be as part of plenary session which focuses on challenges and opportunities surrounding the European Health Data Space.

Abstract: The European Health Data Space (EHDS) is a landmark piece of legislation that aims to enhance citizens’ primary use of data while promoting the ability to reuse data for the benefit of society as a whole. In order to ensure data privacy and bolster cybersecurity, this legislation has created a set of guidelines, infrastructure, and governance mechanisms to facilitate the usage of electronic health data. Its effectiveness will depend on a number of factors, including social trust, digital proficiency, and connectivity throughout the EU, in addition to the ability of Member States to effectively implement the legal basis of the legislation. This plenary will recap achievements to date and discuss successes and challenges with regard to implementation of the EHDS in different Member States and from the perspective of different stakeholder groups.

When: Friday, 27 September 2024, 12:15-13:30
Where: Online (Registration) & European Health Forum Gastein, Tauernplatz 1, Kursaal, 5630 Bad Hofgastein

Speakers: Barbara Prainsack (Department of Political Science, University of Vienna); Marco Marsella (European Commission Directorate, General for Health and Food Safety); Hela Ghariani (Ministry of Social Affairs and Health, France); Uwe Heckert (CEO, Philips DACH GmbH)

Moderation: Nick Fahy (RAND Europe)

Resources