Data governance and trustworthy data ecosystems

To enable data to work for everyone, trustworthy data needs to flow in well-governed ways around the health data ecosystem. When data and organisations are trusted and trustworthy, we see an increase in data sharing, leading to increases in the value that can be created in the form of products, services, analyses and insights created from the data, and better decisions by governments, companies and communities that are informed by data. There are a number of ways that organisations sharing and reusing health data can assess, build and demonstrate trustworthiness, including data governance.

Data governance frameworks ensure skills, policies and processes are in place to build and demonstrate trustworthy data practices. Mapping a data ecosystem can support the creation of such governance frameworks by:

• identifying health data flows

• providing insights into where and how the use of health data creates value

• identifying health data infrastructure, such as standards and technologies

• identifying the key actors who collect, use and share data

• identifying the relationships between stakeholders and the different roles they play within an ecosystem

• identifying blockers, gaps and opportunities for accessing, using and sharing data.

Health leaders who want to understand how to collect, use and share data need to understand how data infrastructure underpins the exchange of data and other value flows across a network of organisations and systems. Exchanging data through harmonising standards and/or identifying existing standards should be a goal of partners in a data ecosystem.