Participatory data governance: How do we know whether a use of data is a good idea?

By: Sydney Idzikowski

At the Charlotte Regional Data Trust (Data Trust), the data we hold in trust are about people and their lives.

In the data sharing world, there are three key questions to ask¹:

1. Is this legal?
2. Is this ethical?
3. Is this a good idea?

Participatory data governance – the intentional inclusion of people with diverse experiences, expertise, and skill who have shared decision-making about how data are used – guides how these questions are answered and by whom. 

[Click here to learn more about this ethical framework for data sharing] 

The Charlotte Regional Data Trust (Data Trust), an integrated data system living happily in the data sharing world, uses a participatory data governance model where many different people guide the work of the Data Trust and make decisions about the use of data. This work predominantly takes place via the structure of the  Data Trust Board of Directors and Committees. This structure and key data sharing and data use activities are outlined in the graphic below.

Is it legal?

This question is (quite appropriately) answered by legal counsel representing the agencies involved in data sharing. At the Data Trust, this is supported by the UNC Charlotte Office of Legal Affairs. This team crafted our legal data sharing documents that enable sensitive data to be legally shared with the Data Trust, regularly consult with us regarding new partnerships and opportunities, and have an ex officio position on the Board of Directors. [Click here to review our template legal agreements]. 

Is it ethical?

This line of questioning considers the risks and benefits associated with a particular use of data. The data at the Data Trust is to serve the public good, so the use of the data must be for a purpose that is for the benefit of the public. Often, multiple stakeholder groups are considered including people represented in the data, the agencies providing the data (data partners), and the residents of the Charlotte region. 

This question is typically determined by a data governance group. At the Data Trust, data license requests are submitted and all requests for data are reviewed by the Data and Research Oversight Committee (DAROC), a committee of the Board of Directors. DAROC is made up of representatives who share data with us, along with some faculty members, and is responsible for making decisions about the use of data. DAROC is one way the Data Trust adheres to legal requirements of sharing sensitive data.  

“Participatory governance is an equity practice,” says Mary Ann Priester, chair of the Data and Research Oversight Committee. “By intentionally including people represented in the data in decisions about the data, [the Data Trust] not only facilitates shared ownership and transparency, but also ensures that data use is ethical, grounded in lived experience, and used for the public good,” says Mary Ann Priester, chair of the Data and Research Oversight Committee.

Over the past several years, the Data Trust has worked to strengthen our participatory governance model through the development of the Community Data Advisory Committee, also known as CDAC. This committee, led by members of the Data Trust Board of Directors and composed of people who are represented and overrepresented in Data Trust data, similarly assists the Data Trust with matters of legality and strengthens our participatory governance model.

Is it a good idea? 

Here, we explore the potential use of requested data to lead to action or change, as well as the priorities reflected in the questions asked. Again, this is often the job of a data governance group. The Data Trust uses all aspects of our participatory governance model to determine if requested data use is appropriate. This is done by:

• Generating  priority questions & finding solutions: Identifying priority research questions occurs through our Strategic Research Agenda, which is guided by expertise on the Board of Directors and all committees, as well as robust community engagement.
• Determining the actionable impact of the use of data: This primarily occurs via review of data license requests by committees. 
• Leadership from those closest to the data and questions: Since our committees are made up of people who work at data partner agencies and people who are represented in the data, we have built-in feedback loops to understand the priorities of these groups and the feasibility of implementing any proposed actions or change. Both of these groups make decisions about the use of the data. 

Participatory governance is a simple enough concept, however, operationalizing a successful and effective model can be challenging. It requires intentionality, strong partnerships, clear processes, and time. Good decisions about data cannot be made in a hurry and people need to be involved in the process.

“These components are needed to ensure that there are formal ways for people who are represented in the data to share oversight and provide their expertise,” says  Angelique Gaines, senior research associate and staff lead of CDAC. Participatory governance allows powerful insights and meaningful solutions to be generated.“ 

At the Data Trust, we have five assumptions that guide how we implement our participatory governance model:

1. Our data are people and people should have seats at the table. Every data point we work with represents a human person or experience. Participatory governance requires people and people bring with them their own expertise and experience. We’ve been working hard to incorporate the expertise of people who are represented in the data throughout our Board of Directors and Committees, such as completing the State of Our Data report, the development of CDAC and learning more about the diverse life experiences of all members of our participatory governance structure. 
2. Everyone needs to build capacity. No one can know everything. And the work of data sharing, data integration, and research about social challenges and solutions is very complex. We are building capacity across our participatory governance groups via collective conversations about important topics like AI. 
3. All data are incomplete. There’s always more to the story. This is about recognizing that we need multiple forms of data to make sense of the world around us. Administrative data can tell us a lot and we also need other forms of information (like maps and interviews and pictures) to add important context to the data. Participatory governance helps bring forth this necessary context  in a robust and thoughtful way.
4. Our business model matters. The way in which we fund our work can drive what priorities get lifted up and explored through our data and research. Our Board and Committees guide the strategic research agenda of the UNC Charlotte + Data Trust, ensuring that the priorities of diverse groups are reflected. 
5. Always, ‘So What?!’ Effectively translating our work and helping people understand why it matters is also a foundational assumption for our participatory governance. People need to know in clear, approachable terms why the work we do and what we learn in the process matters. Our Board and Committees, particularly CDAC, also help share research findings with the community. 

Allof these pieces matter in practice because it’s a process that ensures our community’s data infrastructure is being used for the common good. With participatory data governance, each and every request for data goes through a process where it is reviewed by people with many different kinds of expertise, where ethics and application are considered, and where the benefits to the community are top of mind. Without data governance, data risks losing its connection to people.

With all that’s involved in effective participatory governance, we couldn’t do this work without the support of the people involved in the Data Trust’s participatory data governance work. Huge shout out to everyone who serves as part of our participatory governance structure!
For more about the Data Trust and participatory governance, please explore the following resources:

• Charlotte Regional Data Trust Board of Directors
• Common Good Data Podcast: Moving at the Speed of Trust: Building Ethical Data Systems with Sydney Idzikowski
• Participatory Governance: Long Form Work in Action

Much of the framework for this article was adapted from the 2022 resource from Actionable Intelligence for Social Policy: Finding a Way Forward: How to Create a Strong Legal Framework for Data Integration. 

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¹ Hawn Nelson, A., Kemp, D., Jenkins, D., Rios Benitez, R., Berkowitz, E., Burnett, TC, Smith, K., Zanti, S., Culhane, D. (2022). Finding a Way Forward: How to Create a Strong Legal Framework for Data Integration. Actionable Intelligence for Social Policy. University of Pennsylvania. https://aisp.upenn.edu/resource-article/finding-a-way-forward-how-to-create-a-strong-legal-framework-for-data-integration/

²  Hawn Nelson, A., Zanti, S., Jenkins, D., Algrant, I., Rios Benitez, J., et al. (2025). A Toolkit for Centering Racial Equity Throughout Data Integration. Actionable Intelligence for Social Policy, University of Pennsylvania. https://www.aisp.upenn.edu/centering-equity/