IGF 2023 WS #144 Governing for equity: tools for assessing mental health data


Data Governance & Trust
Big Data Architecture, Usage and Governance
Data Localization, Data Residency, and Data Sovereignty
Data Privacy and Protection

Organizer 1: Doerr Megan, Sage Bionetworks
Organizer 2: Carly Marten, Sage Bionetworks

Speaker 1: Doerr Megan, Civil Society, Western European and Others Group (WEOG)
Speaker 2: Astha Kapoor, Civil Society, Asia-Pacific Group
Speaker 3: Tariq Khokhar, Civil Society, Western European and Others Group (WEOG)
Speaker 4: Chantelle Booysen, Technical Community, African Group
Speaker 5: Amrita Nanda , Civil Society, Asia-Pacific Group


Doerr Megan, Civil Society, Western European and Others Group (WEOG)

Online Moderator

Carly Marten, Technical Community, Western European and Others Group (WEOG)


Doerr Megan, Civil Society, Western European and Others Group (WEOG)


Panel - 60 Min

Policy Question(s)

A. What are the policy considerations and potential pathways to enable ethical governance of sensitive data?
B. How can policymakers within state entities and private organizations successfully build and adopt equitable governance frameworks for sensitive data?
C. How can data subjects (individuals and communities) participate, beyond consent, in drawing value from their own sensitive data?

What will participants gain from attending this session? Through this collaborative, structured multinational conversation participants will:
1) Learn about the risk assessment tool
2) Hear the unique perspectives of others and share their own expertise and experience, expanding shared understanding of the data governance questions the tool raises
3) Consider additional use cases for the application of the tool
Participants will be enabled to question the tool, learn about the background research, and utilize or iterate the tool in their own work and data governance.


In light of evolving digital futures, and the unique role of sensitive data within this, Sage Bionetworks and Aapti Institute, supported by the Wellcome Trust, have developed an openly-shared critical analysis tool that supports increased understanding and purposeful management of potential risks arising from the creation/enrichment of potentially sensitive data sets using mental health data as the primary use case with a specific emphasis on potentially vulnerable populations (e.g., youth experiencing mental health challenges). This session aims to highlight, engage with, and workshop this data governance tool through multinational discussion with diverse stakeholder types, with a focus on the unique governance considerations of the mental health data of youth populations.

The tool aims to assist data holders and processors in structured inventory, critique, and mitigation of the social, ethical, and economic risks to data contributors, key stakeholders, and researchers as they consider the breadth of approaches to data collection/aggregation, storage, sharing, and use to advance understanding of health. This research has been conducted with a participatory, mixed methodology with contributions from global Lived Experience teams and builds from our experience with the MindKind Study, a mixed methods investigation of global youth perspectives on data governance for a mental health databank [https://doi.org/10.1371/journal.pone.0279857].

This work pertains closely to the theme of trust in data governance, and we envision the workshop as a space to both bring multinational perspectives to the tool, as well as share the findings of our research with diverse stakeholders - policymakers, academics, and data governance practitioners alike. The tool serves as an important ethical grounding for entities exploring equitable forms of data governance, particularly in under-researched areas like mental health.

Expected Outcomes

The panel will be structured to do two things - first, to spark a conversation on governance tools for sensitive data such as mental health data and second, to demonstrate the tool built by Sage Bionetworks and Aapti Institute. We expect that through the panel discussion the audience will be able to understand the value of governing sensitive data more meaningfully, as well as apply the tool presented to their own specific contexts. We also will ensure audience engagement through questions and comments to structure a two-way conversation. The tool and a readback of key insights from the panel will be shared with all participants so that the discussion is not just confined to the panel but provides the listener with tangible takeaways.

Hybrid Format: We will ensure equal participation of both online and in person attendees throughout the panel. The opening panel discussion will be hosted on the virtual platform of IGF's choosing and will be equally well consumed virtually as in person. The discussion that follows, planned to span at least half of the allotted block, will alternate between online and in person questions facilitated by our virtual and in person moderators, respectively. We will additionally host a virtual collaboration space (e.g., Miro) to encourage direct exchange between virtual participants and between virtual and in person participants, mirroring the natural interplay between in person attendees.