In late 2023, Mydata Global, Aapti Institute, The Datasphere Initiative, and Connected by Data published ‘In This Together: Combining Individual and Collective Strategies to Confront Data Power, a think piece that looks at how advocacy for better data governance can draw upon the tools of both individual data rights, and collective data governance.
The report broadly found that:
- Individual data protection rights are necessary but not sufficient to deliver better governance of data at scale.
- Many group-based data governance approaches are strengthened by building on individual data protections.
- Gaps remain in the data governance toolbox and require interlocking individual and collective governance mechanisms to fill them.
In this Connected Conversation, we interrogated what this means for concrete programming and advocacy, by asking panellists and invited participants to reflect on how their strategies to challenge the status-quo of data governance in 2024:
- Address different kinds of data, and data-related groups;
- Deploy individual and group data rights; and
- Leverage individual and collective power.
The session opened with a presentation of the report and some elements considered within it. It was noted that definitions of “personal data” are problematic as technical ones may exclude non-individual but deeply personal data. The co-authors of this report had settled on considering data as “from me” (provided or generated); “about me” (usually anonymised or aggregated); or “data that impacts me” (by implications, associations or consequences - such as waste water handling decisions in a locale).
Related individual data rights are generally well established in national and international regulation. They are dependent on numerous factors to be actualised (not least individuals need to know their rights) but they are widely understood. Conversely group data rights are more emergent and understood through a conceptual link with international human rights law. Collective data governance needs strategies to be combined to confront data power.
The report provided five recommendations:
- Use the language of “personal data” with caution
- Be wary of simple solutions
- Balance legal advocacy with other approaches
- Coordinate meaningfully and visibly
- Remember that narratives matter
In part to realise the fourth recommendation around meaningful and visible coordination the floor was then handed to representatives from each of the co-authoring organisations that shared some highlights of work they are doing related to confronting data power in this way.
Carolina Rossini from the Datasphere Initiative reflected that the report represents an evolution of thoughts about how we should be dealing with data, what it should be about and how we should govern it. The Datasphere Initiative is currently supporting the UN in working towards international data governance alongside calling for an international decade for data; convening a Global Sandboxes Forum with cross-sectoral community of experts to design cross-border sandboxes; building on their previous atlas of data governance to create a map of funders and organisations supporting data governance; and, supporting the amplification of the voices of youth for our data future.
Jeni Tennison from CONNECTED BY DATA shared the work we are doing in relation to influencing the Data Protection and Digital Information Bill and prospective regulation around AI in the UK. Looking beyond data protection related rights for individuals we commissioned legal firm AWO to consider the current levels of protection for impacts arising from non-personal data. Their report found that even if there aren’t explicit collective data rights, civil society actors need to be present in the space to support collective action and this needs transparency of systems. Connected by Data are also currently carrying out focused work on collective action in verticals such as the workplace, education and grassroots/community campaigns. Jeni also reflected on plans to continue work on public participation in data governance building on the People’s Panel on AI run during the UK’s AI Safety Summit in November 2023. In addition to the anticipated outcomes from that work (a set of recommendations) Jeni reflected that the wider ripple was also interesting. The participants ended the experience with increased data and AI literacy, group support and are now advocates for the process but also sharing their learning about AI in their communities. Deliberative approaches like this should not be framed as simply a moment, they are also an activating tool for collective support and action.
Vinay Narayan from Aapti institute talked about their work with women’s groups as an example of data stewardship and supporting them to deliver work but also establish a sustainable model that is not dependent on external funding. This links to their previous delivery of a digital public infrastructure playbook that was created for the Indian G20. There is new work starting on data cooperative incubators building on a handbook for the same developed with Data2X and Open Data Manchester. Vinay also spoke about the need to locate people and regulation amongst data infrastructures.
Christopher Wilson from MyData Global talked about their mapping of the wider ecosystem and emergent policy and regulatory frameworks. They are also hoping to do research focussed on understanding amongst different vulnerable groups and across other countries. MyData Global collaborating on projects to design data infrastructure for health records to give people control over their data records.
The session then opened to wider discussion with others sharing their related work and reflections on how we can combine strategies to confront data power.
Data governance and public participation
There was discussion regarding the importance of framing data governance within data spaces such as work, health and justice. Political capital is currently being spent on data governance in these areas and how the public needs to be engaged with those developments where the decisions relate to data from us, about us, and impacts on us. There are gaps in the data governance “toolbox” and enabling public participation to create “standards” (which can be more agile than legislation and binding regulation) would be a positive move and one that can better keep up with the pace of technological change.
Working with communities
There was a desire to work with communities to understand their needs and allowing them to be more visible within data. There is a growing maturity in conversations relating to data trusts / cooperatives and previous positions that considered these more theoretical concepts are now increasingly framing data collectives as a means to an end, an infrastructure. Within that framing comes an understanding that the entity does not need to be permanent, or institutional, that they may in time be best served by dissolving or handing over power.
Confronting power
Global Voices is running a project, ‘The Unfreedom Monitor’ to analyse, document, and report on the growing use of digital communications technology to advance authoritarian governance around the world.
Relatedly there is a need to ensure vulnerable populations are protected and that consent is a meaningful concept. An article shared in the session, ‘The Urgent Need to Reimagine Data Consent’, explores this.
Next steps
There was a strong feeling in the room that reconvening the space in a year or so would be welcomed to see the progress people are making. Many of the attendees shared contact information and we hope that by supporting the surfacing of these discussions and the recommendations from the report that further collaborative impact will be made.
The paper In This Together, and the Connected Conversation series are supported with funding from The Omidyar Network.