We are pleased to have teamed up with Annie Chiang and Prof Rachel Simon-Kumar (University of Auckland) to host three participatory research sessions about Ethnic Data Sovereignty. These sessions contribute to a study being progressed by Rachel and Annie with further details about participation, the study and what is involved available here.

Please note that these Tautoko sessions use an adapted online focus group approach and welcomes researchers/knowledge-makers and end-users from both public health and non-public health sectors.

Attendance will be by registration only. Each session has space for 35 participants. The sessions are all the same, so please only register for one session.

You are invited to attend ONE of the following sessions:

Friday 17th October 12-1:30pm

Monday 20th October 12-1:30pm

Friday 24th October 12-1:30pm

One week prior to your chosen session, consent forms will be sent out. Once the research team receive your completed form, they will send you the zoom link.

Ethnic Data Sovereignty: What are the issues?

Presenters/Facilitators: Annie Chiang and Rachel Simon-Kumar

‘Data Sovereignty’ describes the right to decide how data relating to individuals or communities are collected, accessed, managed, interpreted, used, and reused. This concept and associated frameworks were developed by indigenous scholars to assert their right to self-determination and to respond to misuse of indigenous data. In New Zealand, there is a growing body of scholarship on Māori Data Sovereignty and Pacific Data Sovereignty. Our study aims to explore what data sovereignty might mean and look like for Asian, MELAA, ethnic, migrant and former refugee communities.

In this participatory session, we provide a background to our study and the current literature on sovereignty issues for minority and marginalised populations within European and Anglophone contexts. Following this, we invite attendees to participate in our guided questions related to data considerations within their respective spheres. Session participants can engage in a discussion on some of the more topical and concerning issues to do with data for and about ethnic communities.

Participation is completely voluntary. Whether or not participants choose to take part, does not affect their relationship with Community Research and the relationship remains unchanged.

Approved by the University of Auckland Human Participants Ethics Committee on 03/06/2025 for three years.

Reference Number UAHPEC29616.

Annie Chiang is a researcher and teaching fellow at the University of Auckland. She recently completed her PhD on missingness in government collected datasets. She is keenly interested in the relationship between the state and citizens and the role that data plays in negotiating respective rights and responsibilities.

Rachel Simon-Kumar is Professor at the School of Population Health, Waipapa Taumata Rau/University of Auckland. She is interested in the politics of health for migrant and ethnic communities, and the role of data in constructing and deconstructing population groups.

What is an ethnic, former refugee, and migrant researchers online Tautoko session?

Ethnic, former refugee, and migrant researcher Tautoko sessions provide a dynamic informal space that fosters a collective sense of shared purpose with opportunities to learn from each other, share stories, experiences, research activities, methodologies, challenges, gaps and explore ideas and opportunities.

We celebrate all forms of community-led knowledge-making, whether it's community-based mahi and mātauranga, or based within organisations, the public service, or academia. If you are developing or an ally of 'by community for community' learnings, we value your thoughts and contributions and want you to be part of our research network.

Tautoko sessions:

are an informal unrecorded safe space for connection, sharing and kōrero

a space where we recognise our diverse lived experiences, privilege the voices of those who are heard less often (including former refugee and ethnic migrant voices), and acknowledge the distinction and context differences between forced and voluntary migration

are guided by and contributed to by Tautoko session participants

prioritise informal kōrero and connection for some sessions and more formal specific topic focused kōrero at others.

Contact the host of Ethnic Data Sovereignty - Tautoko Session Series