Thanks to Heather’s training the other week, our team has had some really good discussions around data equity. One thing we are struggling with is how communities can own data. What does that look like? Shared data agreements? But with whom? Any advice would be so appreciated!
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Great question @MJurr thank you for asking it here.
There are several different ways that communities can own data. The ideal way depends a lot on the type of data, the context, and what the community might want to do with the data.
I’ll share some examples here:
Shared data is sometimes a good form of community ownership. Here is an example with health data in the USA:
https://www.naccho.org/uploads/downloadable-resources/Issue-Brief-Data-Sharing-Framework-NA592.pdf
The DASH (Data Sharing Across Sectors for Health) Initiative also includes several examples of community owned or shared data:
Another approach is often called the “data commons” as a way for communities to own data:
https://journals.sagepub.com/doi/full/10.1177/00380261221088120
This example of community ownership comes from Mumbai and a census:
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@MJurr Could you share more about how the data collection was conducted, or current plan for the data collection methods? I’m really interested!
We ran a community-based survey at Denver PRIDE Fest this year, with the intent for the individuals who opted in for subsequent contact (‘panel’ ~300 ppl) to ultimately decide what they want us to help them do with the data. Right now we are developing products to communicate the data to the panel but have not reached out to them yet. Our rough idea is to develop a (compensated) community advisory board from members of the panel who would work with an advisory board composed of data professionals and local folks working in LGBTQ+ advocacy to develop a long term vision for the annual survey, including the formation of research questions and modifying survey design, and focus groups, according to what feels most meaningful to community members.
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It’s hard to find recent US based info, but other countries have a legal framework for a data trust. This MIT Technology Review article highlights some cases this kind of approach. The article gives a nod to data cooperatives and data unions which have different legal and operational structures.
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