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Videos

Amplifying narratives around stewardship is one of our core goals. Through events and video interview series, we aim to unpack and highlight use-cases and real-world experiences that relate to data governance, participation and organizational structure.

Powering sustainable futures for mobility by data-driven innovation

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For our ninth video in this series, we spoke to Lea Strohm, the founder of Posmo, a mobility data cooperative that is forging a sustainable future for cities through data-driven research and insights. During the discussion, we explore the possibilities of better sharing, how data can be leveraged for better impact, and the ecosystem level support needed to grow and scale their operations.


Speakers

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Lea Strohm

Lea has a multidisciplinary background in international relations and innovation studies. With a special interest in health innovation, she has conducted research on the implementation challenges of using AI in medicine, more precisely in the field of medical imaging. Currently, Lea is working at ethix – Lab for innovation ethics, based in Zurich.

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Maximizing user control & privacy of personal data

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For our eighth video in this series, we spoke to Julian Ranger, the founder of digi.me which has built a privacy-by-design platform that grants individual users maximum control over their data. During the discussion, we explore the possibilities of better sharing and accelerating the velocity of personal data while maintaining consent, security, and privacy at the heart of operations.


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Julian Ranger

Passionate about the power of personal data, Julian is an aeronautical engineer specialising in interoperability and the military internet, who built his first company into a major multi-national business before selling to Lockheed Martin.

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Decentralizing real-time data exchange through ‘Data Unions’

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For our seventh video in this series, we spoke to Marlene Ronstedt, Crypto Relations lead at Streamr. In the discussion, we learn about how Streamr's peer-to-peer network works and cover existing and possible use-cases for the data union model.


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Marlene Ronstedt

Marlene is a writer, speaker and artist. She is based in Berlin where she has worked for the Finleap venture Perseus and the blockchain startup Neufund to immerse herself in the tech world. Her German and English writing has appeared in Wired, Coindesk and Hackernoon. Besides, she acts as a program coordinator at FP24 gallery in Antwerp. She holds a BA honors degree in Liberal Arts & Sciences: Global Challenges from Leiden University College with a minor in journalism and another minor in fine arts which she received from the Royal Academy of Art, The Hague. Further she holds an MA in Digital Culture from Goldsmiths University London.

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Powering human-centric data exchange networks

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For our sixth video in this series, we spoke to Matthias De Bièvre. CEO of Visions & Co-Founder of 'new governance. During the discussion, we learn how Visions is realising their goal of creating user-friendly, transparent, and accessible data exchange networks in skills/education and mobility.


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Matthias De Bièvre

Matthias De Bièvre is on a mission to bring knowledge and harmony in the use of personal data. Visions is working with organizations across the world to build a new open network to share personal data at the service of each person’s objectives and personal evolution and well-being. Visions work with major organisations (public and private) to make this happen.

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Empowering citizens, patients & researchers through data

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For our fifth video in this series, we spoke to Mad Price Ball, the Co-Founder of Open Humans' a platform "dedicated to empowering individuals and communities around their personal data, to explore and share for the purposes of education, health, and research". Run and oriented around the community, Open Humans helps individuals access, understand and share their personal data, contributing to citizen science and patient-centric research. During the discussion, we explore why Open Humans was founded and how it is structured to ensure participants can play an active role in deriving value from their research - disrupting the status quo often associated with the academic ivory tower.


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Mad Price Ball

Mad Price Ball is an Executive Director and President of Open Humans Foundation and co-founder of Open Humans, and Affiliate Faculty at the Center for Research and Interdisciplinarity (CRI). Their past experience and research have included work in genomics and biotechnology, bioethics, digital technology, and advocacy, as well as participatory and participant-centered research.

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Empowering menstruators through data-driven research & personal insights

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For our fourth video in this series, we spoke to Carrie Walter, the Co-CEO of Clue "a period tracking app, a trusted menstrual health resource, and a thought leader in the FemTech movement." During the discussion, we learn about Clue's vision and how this is supported by the responsible use and sharing of data with a trusted research organization, powering inclusive studies on reproductive and menstrual health.


Speakers

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Carrie Walter

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Empowering gig workers through data

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For our third video in this series, we spoke to Hays Witt, the Co-Founder of Driver's Seat a driver-owned cooperative committed to data democracy. Their goal is to empower gig workers and local governments to make informed decisions with insights from their rideshare and delivery data. During the discussion, we explore why Driver's Seat was founded and how it is structured to enable workers in the platform economy to derive maximum value and agency over their data - effectively reclaiming power in an otherwise inequitable data economy.


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Hays Witt

Hays Witt co-founded Driver's Seat after a 20-year career running high-impact campaigns that empowered low-wage workers and communities while transforming industries like air travel, waste management, and commercial real estate to make them more equitable, inclusive and climate-friendly.

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Secondary reuse of health & social data

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For our second video in this series, we spoke to Antti Piirainen, the head of communications at Findata, a Health and Social Data Permit Authority in Finland that issues permits for the secondary use of health and social data.

During the discussion, we explore the processes and possible uses behind the secondary use of health and social data.


Speakers

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Antti Piirainen

Experienced Comms Pro with a demonstrated history of working in government administration. Skilled in Corporate Communications, Social Media, and Public Relations. Media and communication professional with a Master of Social Sciences (M.Soc.Sci) degree in Communication and Media Studies from the University of Helsinki.

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Unlocking value and control over our health data

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For our first video, we spoke to Ernst Hafen, the founder of MiData, a citizen-owned health cooperative that offers a digital platform to securely store personal health data (genomic data, medical records, smartphone data). During the discussion, we explore how the individual and collective value of health data can be unlocked while giving us greater control and agency over its governance.


Speakers

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Ernst Hafen

In 2008 he initiated the multidisciplinary systems biology project WingX - The Systems Biology of the Drosophila Wing. As a trained geneticist he has a strong interest in human genetics and personalized medicine. He seeks and supports more efficient ways of translating scientific discoveries into products. In 2012 he acted as a founding member of the Association Data and Health.

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Tracking Stewardship

As part of our research, we aim to learn from people and organisations that are implementing stewardship on ground. The Tracking Stewardship series, spotlights conversations we've had with practitioners to understand the multiple ways in which stewardship can be structured and how this varies across data types, purpose and sector.

Posmo • Lea Strohm

Powering sustainable futures for mobility by data-driven innovation

Digi.me • Julian Ranger

Maximizing user control & privacy of personal data

Streamr • Marlene Ronstedt

Decentralizing real-time data exchange through ‘Data Unions’

Visions • Matthias De Bièvre

Powering human-centric data exchange networks

Open Humans • Mad Price Ball

Empowering citizens, patients & researchers through data

Clue • Carrie Walter

Empowering menstruators through data-driven research & personal insights

Driver's Seat • Hays Witt

Empowering gig workers through data

Findata • Antti Piirainen

Secondary reuse of health & social data

MiData • Ernst Hafen

Unlocking value and control over our health data

Non Personal Data, Public Value & Accountability

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The panel of experts discussed a few key questions related to the future of data governance in Non-Personal Data (NPD). NPD has taken center stage in current discourse around data governance. The latest development of the release of the Report by the Committee of Experts on a Non-Personal Data Governance Framework is part of a larger trend across the globe on efforts to understand the nature of the need to regulate data, apart from the basic protections to individuals over their personal data.

Some of the fundamental questions center around the basis for regulating NPD – there are privacy concerns, with claims of complete anonymization being impossible, but also questions of value and its accumulation, and how the interests of end-users are best served.

The challenge with NPD is that a beneficiary or clearly identifiable set of interests to protect may present a challenge. Being non-personal, it is the interest of the community and not only of an individual at stake. A challenge in framing a good regulatory approach lies in identifying the community(ies) that may be impacted and how regulation can protect their interests. Clear identification of interests as a problem statement is essential to framing regulation to protect it.

Related to the identification of interests to be protected is also the identification of community harm. Community rights and their protection still lack clear articulation, and preventing collective harm requires further definition and precision.

Lastly, a cognizance of power structures and existing successes (and failures) of regulatory approaches are required in order to frame a policy capable of achieving its objectives. Any policy tools for this would need to take into account the existing infrastructure for lessons as well as create compatible governance structures. The Indian draft policy, for instance, has used a form of data stewards to try to address this issue – though the formulation leaves questions of accountability and grievance redressal mechanisms.


Speakers

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Malavika Raghavan

Malavika is qualified as a lawyer and leads an interdisciplinary team at the Future of Finance Initiative at Dvara Research, focusing on emerging issues for policy and regulation at the intersection of technology, finance, and inclusion.

Richard Whitt

Richard Whitt is an experienced corporate strategist and technology policy attorney. Currently, he serves as Fellow in Residence with the Mozilla Foundation, and Senior Fellow with the Georgetown Institute for Technology Law and Policy. As head of NetsEdge LLC.

Sushant Kumar

As the principal on the beneficial technology team, based in India, Sushant is focused on Omidyar Network’s work on encrypted messaging, platforms and power, and alternative business models, with a vision for technology that underpins greater individual empowerment, social opportunity, and user safety.

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Unpacking Community Consent & Collective Models for Data Stewardship

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There is a general and growing consensus that individual rights in data are critical, and that people must have a greater say in how their data is collected, used, and managed. Innovations such as personal data stores facilitate greater individual control over data for a number of purposes, including sharing and monetizing one’s personal data. Monetization of personal data is also being considered in the form of monetary dividends. This focus on individual entitlements in the data economy ignores that people, in their atomized online existence, cannot negotiate with technology companies for their data rights. For instance, expecting people to navigate privacy policies, irrespective of design, puts an undue burden of consent on individual users. Individual consent is broken, and remedies for isolated grievances do not lead to systemic changes in the data economy.


To remedy this, community rights and collective bargaining are being considered by scholars and thinkers. This makes sense as data is only valuable as a large collected resource – the value of the network is critical. Insights about individuals are drawn through networks and communities we inhabit. Digital exhaust or data about us from ambient environment – CCTV, satellite imagery, IoT machines is also representative of the community. Further, in some interpretations datasets of value are a result of labor performed by a number of groups of people online – therefore decisions on data should be made by representatives of these groups. It is also apparent that exercising individual data rights in some cases might compromise those of the community. Viewing community data as a public resource can help unlock data for the benefit of the community itself.

The idea of community ownership and governance of data and decisions around it needs to be reworked to bring offline support systems and voice to online action can help restructure some of the injustices of the data economy, and lead more decentralized ideas of power and control. There is some scattered activity on this, for instance in indigenous data sovereignty – the rights of Indigenous peoples and tribes to govern the collection, ownership, and application of their own data”. More recently, movements like BlackLivesMatter, aim to use data to empower communities of color.

In this panel, we discuss, decentralized systems of data governance through community action, and draw lessons for a reimagination and renegotiation of data rights.


Speakers

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Jasmine McNealy

Jasmine E. McNealy is an associate professor in the Department of Telecommunication, in the College of Journalism and Communications at the University of Florida, where she studies information, communication, and technology with a view toward influencing law and policy.

Anouk Ruhaak

Anouk creates new models of data governance for the public good. As an architect and advocate of data trusts, she promotes governance models that safeguard privacy and protect society from the negative externalities of data sharing.

Parminder Singh

Parminder is the executive director of IT for Change. His areas of work are ICTs for development, Internet governance, e-governance, and the digital economy.

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Data Sharing for India’s Migrant Crisis

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In the wake of the COVID-19 lockdown, the Indian government, and civil society organizations have been unable to fully assist migrant laborers in their need for aid, trains or housing. These institutional failures, coupled with a lack of data, have made it challenging to provide support for migrants during this time. Robust data sharing processes are critical to driving responses to enhance the livelihoods of migrant workers, not just in a state of emergency. As existing data has been plagued with conflicting accounts of the exact number of stranded migrants, this gap has had to be filled by an ad-hoc collection of data by both Government and civil society organizations.

In addition, the increased penetration of digital technologies has greatly impacted the migrant experience – many of whom now heavily rely upon media communications for safety, communication, and access to public resources. From top-down governmental structures that rely on biometrics to bottom-up resource and information access through social media channels, it is increasingly challenging to manage surveillance and privacy controls in a digitized world. Users of digital technologies, especially migrant workers in the gig economy, are in unequal relationships with platforms, with little space to negotiate how data is collected, accessed, and shared. Their existing vulnerabilities are accentuated online, as they do not have the knowledge about harms and risks to privacy but are also in data-extractive relationships with the state, which seeks to collect information in return for service delivery and the private sector on which they are dependent on for communication, payments, and information.

We especially believe there is a case for data stewardship here, in which interoperability of datasets, consent mechanisms, and ownership can be entrusted to an intermediary that facilitates the use and flow of data on migrant movements. In this roundtable, we hope to explore how we can re-imagine data governance frameworks for migrant workers in India, that protect individual rights and enable better service delivery.


Speakers

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Gargi Sharma

Communications and Development Manager at the CLIMA Fund | Junior Researcher at Tilburg University

Aditi Surie

Aditi Surie is a sociologist with training from the Department of Sociology at the Delhi School of Economics. Aditi’s research has been academic, policy-focused, and action-oriented over the past seven years.

Katie Pickett

Katie Pickett is a geospatial and international development professional with a graduate degree in Geographic Information Systems (GIS) and an undergraduate degree in International Studies, Africana Studies.

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Data Stewardship & Women’s Safety

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Across the world, cities and public transport systems have not been designed to be gender-neutral. This disproportionately affects women, who face unique challenges in navigating these spaces and are frequently subjected to forms of harassment or violence. As some of the most vulnerable populations of cities, the lack of inclusive policies further inhibits women’s mobility and access to essential services. This is exacerbated by the limited representation of women in urban planning, and gaps in data which further render women and their experiences, invisible.

Acknowledging these concerns, international Institutions encourage the collection of gender-disaggregated and gender-specific data in order to drive responsive policies and channel investment towards necessary infrastructure. Data for ‘women’s safety’ tends to be collected through public-private partnerships, by civil society or private companies. This often includes non-personal crowdsourced data or personal data from wearable devices or location-based apps. Aggregate data is typically shared in open formats with communities, planning or transport authorities, and in some cases law enforcement.

However, governance of data - how it is stored, used, and shared - often lacks transparency and accountability. Particularly for the collection of personal data, it becomes critical to address issues of privacy, so as not to impose additional surveillance or coercive control over women’s mobility or agency. Considering that data collection efforts will expand, it becomes increasingly relevant to address how this can be more securely enabled and governed.

At Aapti, we have been exploring how a framework of data stewardship could effectively facilitate trust between stakeholders and protect the privacy of its users if built on pillars of transparency, accountability, and representation. During this roundtable, we discussed what it will take to bridge the gender data gap, drew learnings from existing models of data sharing, and envisaged what a good steward for Women's Safety would look like.


Speakers

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  • Jillian-Kowalchuk
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Kalpana Viswanath

Kalpana Viswanath is a social entrepreneur in India. She is the co-founder and CEO of Safetipin, a social enterprise that uses technology and apps to collect data for the safe movement of women in urban spaces.

Jillian Kowalchuk

Award-winning serial change-maker, entrepreneur, and win-win enthusiast. Founder & CEO of Safe & the City | Speaker | Business Coach.

Amit Bhatt

Amit is based in Delhi and provides vision and leadership to all transport initiatives across WRI India Sustainable Cities, managing relationships with partners and stakeholders.

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Data Deliberations

A series of roundtable discussions with experts to explore existing and new approaches to sharing data for Women's Safety, Migrants, Community, and Non-Personal Data.

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Non Personal Data, Public Value & Accountability

Unpacking Community Consent & Collective Models for Data Stewardship

What does it take to build decentralised data governance through community action? This discussion aimed to draw lessons from experts and organisations re-imagining and re-negotiating data rights.

Data Sharing for India’s Migrant Crisis

Data can be a powerful tool if collected and shared responsibly and ethically. In this discussion we explore frameworks for data governance that can empower and protect migrant workers in India.

Data Stewardship & Women’s Safety

The lack of gender disaggregated data makes it complex to understand, plan for and build cities that are inclusive. In discussion with experts and organisations

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