Socio-cultural norms

There are a number of socio-cultural influences that could impact health data collection, use and sharing. This has been documented in a number of studies including from Transform Health and the Open Data Institute. Consideration of local socio-cultural norms might include understanding more about:

• Variations in local implementation of regional or national data protection regulations.

• Policy changes around access to health data, for example prioritising access to certain groups or organisations, and influencing the willingness of communities to consent to share data about them.

• The extent of public versus private healthcare available. Patients in countries with a focus on private healthcare insurance may be less willing to share health data through fear of an impact on costs.

• The values and norms of the communities you are collecting data about, or who might be impacted by its use. For example, some communities might seek to have data about them governed in ways that ensures they benefit from any data they share, and other communities might place greater value on reducing health inequalities. Indigenous communities around the world have developed data governance practices to help safeguard their rights over data about their communities. For example, the CARE Principles acknowledge that decisions on the use and interpretation of data requires input from community members. Similarly, data that reflects marginalised populations facing greatest health inequality often see the data about their community's health outcomes as community-owned, and may request participation in any decision-making bodies accessing and using this data.

Key questions to ask:

• Has there been any recent government policy changes or public debates that define norms on how health data is shared with external organisations?

Useful resources:

• A paper from The Royal Society on data ownership.