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Data Governance and Indigenous Data Sovereignty

Walkern Katatdjin Data Governance Statement

This statement outlines the governance protocol for data collected in the Walkern Katatdjin (Rainbow Knowledge) National Survey. The statement is guided by the “Good Data Practices for Indigenous Data Sovereignty and Governance” document developed by Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective (1).

 

1. Introduction to Indigenous Data Sovereignty

The Walkern Katatdjin project recognises the deep importance of data sovereignty for Aboriginal and Torres Strait Islander peoples in Australia. We are committed to employing principles of Indigenous Data Sovereignty (IDS) and acknowledge that IDS is necessary for  Indigenous peoples’ self-determination.

 

We adopt the following definition of IDS:

“Indigenous Data Sovereignty’ refers to the right of Indigenous people to exercise ownership over Indigenous Data. Ownership of data can be expressed through the creation, collection, access, analysis, interpretation, management, dissemination and reuse of Indigenous Data” (1)

In plain English, this means that decisions about what happens to the information provided by Indigenous LGBTQA+ young people who take the Walkern Katatdjin National Survey are made by the Indigenous LGBTQA+ community and are consistent with Indigenous ways of knowing, being and doing.

The foundation of IDS is in the United Nations Declaration on the Rights of Indigenous Peoples (2007) (2), most notably articles 11 and 31*.

It has since been expanded and articulated by Indigenous peoples globally, and adapted for local contexts.

 

2. Data governance

Data governance is a crucial aspect of IDS. Data governance is defined as:

“Data governance is the power and authority over the design, ownership, access to and use of data.”(3)

In plain English, data governance means:

  1. Which groups of people hold the data

  2. Which groups of people have the authority to access and use the data

  3. Which groups of people have the authority on the data is used. Data is typically used in peer-reviewed publications, conference presentations and community reports to answer a specific research question.

 

2.1 What is the ‘data’?

In the Walkern Katatdjin National Survey, the ‘data’ is all the answers that participants give to survey questions. These include answers to questions on demographics (i.e., age, gender, postcode, sexuality, employment status, accommodation status, and disability status), social emotional wellbeing (connection to culture, connection to community, connection to Country, connection to family and kinship, connection to mind and emotions, connection to body, and connection to spirituality and ancestors), experiences due to being Indigenous and LGBTQA+, identity, family acceptance and rejection, psychological distress and suicidality, and experiences in health services.

 

Data will be stored in an electronic file on investigators’ password protected work computers.

 

2.2 How will the data be used?

The data will be used to answer research questions which align with the objectives of the Walkern Katatadjin. These objectives are:

  • To quantitatively index the mental health (including suicidality) and social emotional wellbeing (SEWB) of Indigenous LGBTQA+ young people

  • To determine the risk and protective factors for poor SEWB and mental health, and determine protective factors for Indigenous LGBTQA+ young people

  • To understand Indigenous LGBTQA+ young peoples’ experiences with health services and their service preferences

  • To determine whether Indigenous LGBTQA+ young peoples’ SEWB, mental health and experience in health services differ based on geographical location

 

2.3 Who owns the data?

A commitment to IDS principles also means being open and clear about who owns the data given by participants.

The data collected in the Walkern Katatdjin national survey is anonymous. This means that we do not ask participants their name or any other identifying details. This also means that we cannot link any participant to the data they provide. The reason for having an anonymous survey is so that participants can provide open and honest answers to survey questions without fear of these answers being linked back to them. This is particularly important for participants who are not ‘out’ about their gender and/or sexual identity.

IDS principles recognise that Indigenous peoples and communities should own the data they provide to researchers. It is not always possible, however, for participants to retain ownership of their data, as is the case here. Because Walkern Katatdjin survey responses are anonymous, participants cannot request that the answers they provide be removed from the data file. Therefore, once a participant enters data into survey they are agreeing that their data will be held by the researchers. At the end of the survey, each participant will be given an option to download an electronic copy of the answers they provided in the survey. Thus, participants will have access to a copy of their data.

 

3. Who will govern the data?

There are two phases to data governance in Walkern Katatdjin National Survey:

 

Phase 1: June 2020-Februrary 2021.

Data will be held in an electronic file on project investigators’ password protected work computers. Decisions on what research questions the data will be used to answer and who can access the data will be made in conjunction with project investigators and the Walkern Katatdjin Youth Advisory Group (YAG). The YAG consists of nine Indigenous LGBTQA+ young people from across Australia (i.e., members of the Indigenous LGBTQA+ community). YAG members are invited to give feedback and/or to co-author all study publications. All publications which results from the use of the data must be approved by the YAG before being submitted to a journal or being made public.

 

Phase 2: February 2021- onwards.

Project funding ceases in February 2021. As of this date,  we will no longer have funds to reimburse YAG members for their time and thus we do not expect them to play an ongoing role in data governance mechanisms. That said, we will invite YAG members to volunteer to continue their role in data governance. Should no YAG member volunteer, we will seek at-least two volunteers from the Indigenous LGBTQA+ youth community to uptake data governance. Data governance will additionally be handed to the Kulbardi Aboriginal Centre, Murdoch University. Kulbardi Aboriginal Centre exists to support Indigenous students at Murdoch University. It is well regarded within the local Noongar community and is an avid supporter of social inclusion of Indigenous LGBTQA+ peoples. All data governance decisions will be made in conjunction with project investigators, the manager of Kulbardi Aboriginal Centre, and members of the Indigenous LGBTQA+ youth community. One of the Walkern Katitjin project investigators is employed by the Kulbardi Aboriginal Centre.

 

3.1 Questions that the data governance mechanism will answer:

  • Requests from project investigators, community members, or academics external to the project (i.e., potential collaborators) to use the data to answer a research question outside the scope outlined in section 2.2.

  • Requests from community members, or academics external to the project (i.e., potential collaborators) to access the data to answer a research question within the scope outlined in 2.2.

  • Requests from community members for a project finding to be suppressed or have limited dissemination

  • Requests from community members for project data to be deleted

 

4. Review Mechanism

This data governance protocol is implemented as of August 2020. It will be reviewed every five years by project investigators, the manager of Kulbardi Aboriginal Centre and in consultation with Indigenous LGBTQA+ youth community members. The data will be stored for an unlimited amount of time unless otherwise decided by the data governance group.

References:

1. Lovett, R., Lee, V., Kukutai, T., Cormack, D., RAINIE, S. C., & Walker, J. (2019). Good data practices for Indigenous data sovereignty and governance. Good Data. Amsterdam: Institute of Network Cultures, 26-36.

2. Maiam nayri Wingara Indigenous Data Sovereignty Collective, (n.d.) 'Key Principles' available at: https://www.maiamnayriwingara.org/key-principles

3. United Nations Declaration on the Rights of Indigenous Peoples (2007), available at: https://www.un.org/development/desa/indigenouspeoples/declaration-on-the-rights-of-indigenous-peoples.html

 

Useful Links:

For more information about IDS in Australia: https://www.maiamnayriwingara.org/

The Global Indigenous Data Alliance: https://www.gida-global.org/

Book - Indigenous Data Sovereignty: Towards an Agenda: http://press-files.anu.edu.au/downloads/press/n2140/pdf/book.pdf?referer=2140 

IDS in New Zealand: https://www.temanararaunga.maori.nz/

IDS in Canada: https://fnigc.ca/ocap

IDS in the United States: https://usindigenousdata.org/

Additional notes:

* UNDRIP 13 September 2007

Article 11: Right to culture Indigenous peoples have the right to practice and revive their culture and traditions. Governments will work with Indigenous peoples to ensure Indigenous property rights to their cultures, knowledge, spiritual and religious traditions are respected, and to address cases where these have been used without free, prior and informed consent.

Article 31: Cultural and intellectual property Indigenous peoples have the right to their cultural and intellectual property, and governments will recognize and protect this right. Examples of cultural and intellectual property are stories, songs, dance, designs, art, ceremonies, sacred sites and remains of ancestors. Intellectual property includes things like Indigenous peoples’ knowledge of their laws, spiritual, social, health, education, economic, and environmental beliefs, systems and practices

Get in contact

If you have any questions or would like more information you can contact the project team here:

Email: Rainbow.Knowledge@telethonkids.org.au

Phone: (08) 6319 1062

Get help now

If you are in need of help urgently, please call Lifeline on 13 11 14

www.lifeline.org.au

 

You can also access support at:

 

Kids Helpline (free call) 

1800 55 1800  

kidshelpline.com.au

or

QLife (free call or webchat) 

1800 184 527 

www.qlife.org.au

Acknowledgement

We acknowledge that this research is taking place on the traditional lands of the Whadjuk Noongar people. We pay our respect to the Elders past, present and emerging.

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