Data Governance
Established processes of stewardship, leadership and accountability in the ethical creation and use of data for decision-making.
What are the sub-capabilities?
- Use, re-use and sharing
- Stewardship and management
- Ethics and inclusivity (consent, incorporation of consumer perspectives and experiences within organisational data policies and practices)
- Legality
- Risk Management
- Data breach
What are the core questions?
- Who is accountable for datasets, and who has the authority to control access and use them?
- Who takes responsibility for managing privacy and data security?
- What are the guiding ethical principles for ethical decision-making around issues such as data sovereignty and stigma?
- How are ethical issues identified and addressed?
- How does the organisation make decisions around what data to store and how to store it?
- How does lived experience inform decision-making around the collection, use and storage of data?
- How are legal requirements and security monitored and implemented?
- What processes are in place to prevent, monitor and respond to a data breach?
What does data governance look like in practice?
CASE STUDY 01
The Sexual Health Organisation (SHO) is developing a new digital pre-screening form to help facilitate better treatment journeys for their consumers. The SHO leadership meet to discuss the progress of the forms’ development and use the Data Model to facilitate discussions around its governance.
Using the Model prompts a reflection on some of the ethical issues related to collecting and storing sensitive consumer data. SHO is working hard at increasing accessibility. The team discusses whether the questions on the new form is appropriately inclusive of diverse identities, bodies and experiences.
To make sure the pre-screening data collection process is something consumers want and feel safe using, the SHO leadership team decide to establish a lived experience group of young adults, sex-and-gender diverse consumers and sex workers to inform its development. The leadership also seeks advice from relevant peak bodies (such as Scarlet Alliance and Intersex Human Rights Australia).
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