The practical and ethical implications of inclusive data
Data Values Digest #21
Through my career, I’ve explored issues of inclusion and equity from many perspectives—from addressing entrenched disparities in healthcare access to tackling the complexities of generating data with groups who are marginalized. As I’ve worked alongside and learned from different communities and organizations, I’ve come to understand that there is always more we can do to shift unjust and unfair power dynamics. Rather than trying to find the perfect solution to meaningful engagement, it’s about continuing to learn, iterate, and evolve our approaches over time.
I’ve seen a considerable shift toward creating more inclusive data systems over the years. Central to this movement lie efforts to address the power imbalances inherent in data collection and use by thoughtfully engaging and empowering communities. But this is easier said than done. Too often, we (as a sector, but also through the Global Partnership’s own work) have been guilty of recommending that organizations “consult with affected communities” without unpacking the practical and ethical implications of such advice.
We can and must do better. From conversations about agency in the Data Values Project, we know much of our community is grappling with big questions: How can we ensure communities have a say in and are engaged in what data is collected, for what reasons, and how, when, and by whom it is used? What does genuine inclusion look like?
Within these big questions, the details are important. Data producers must engage communities in ways that:
recognize, value, and compensate people fairly for their time, insights, and expertise.
respect the inherent diversity of views within communities, understanding that people have different priorities and varying degrees of interests in issues.
provide space for meaningful contributions while being transparent about the limitations and practicalities of projects and organizations.
balance between project-specific thinking and the broader needs and interests of individuals in affected communities.
protect people and not put them at risk.
avoid subjecting people to repetitive and costly asks for information which are often duplicated by different organizations.
surface not only the needs and issues of communities, but also their resilience and strengths.
Underpinning all of this, is a critical question: How do we engage people in ways that address power asymmetries when the organizations and governments collecting data often have immense power and resources relative to local communities?
Grassroots organizations are critical to navigating these issues and initiating and sustaining meaningful community engagement, but they often face limited time and resources. These relationships easily become extractive, replicating existing power asymmetries.
Rich experiences and knowledge exist going back decades among research communities, civil society organizations, citizen democracy movements, and other groups on these questions. But this is also a fast-evolving issue, with organizations continually learning, rethinking, and advancing their engagement approaches. ActionAid’s ‘Reflection Action’ hub is a great source of information on participatory methods, as is the Institute of Development Studies ‘Participatory Methods’ site.
In the hopes of moving towards more practical suggestions, I wanted to share some reflections from my own work. This list is far from comprehensive, and I welcome feedback on what should be reframed, added, or removed:
Define “community.” Consultations will rarely, if ever, be completely representative. It’s important to reflect on how we defined “communities of interest” for specific projects, ensuring we consider who may be inadvertently excluded. Sometimes, due to contexts, resources, or project limitations, it may be necessary in the short run to prioritize certain groups—like women and girls in gender-based violence research in conflict zones, even though it’s an issue that affects men, boys, and members of the LGBTI+ community, too.
Consider what you’re giving vs. getting from people. Commit equal time to planning what communities and grassroots organizations get from engaging with you, as what you need to source from them. Some possible options to consider: financial compensation for time, expertise, and costs incurred (like travel or data costs), reciprocal learning or capacity-building opportunities, leadership opportunities such as co-authorship or speaking slots, fair recognition and attribution, and longer-term, resourced partnerships.
Reflect on where an organization or project lands on the spectrum of participation. This scale, developed by the International Association for Public Participation, includes five levels based on the idea that “those who are affected by a decision have a right to be involved in the decision-making process.” It’s a simple method to reflect upon accountability measures for meaningful participation.
Manage expectations. Be upfront and honest about what’s possible and what options are off the table. Make your work and staff accessible, accountable, and transparent to local communities.
Do your homework early. Refer to resources that organizations and people within affected communities have developed on participation and data. Engage with organizations and interest groups early in the scoping and design of programs and policies when their experience and expertise can shape your approach.
Think about broader changes. Consider how other elements of work could shift to address power imbalances. We often wait until we’re creating a project or collecting data to ensure we’re engaging communities. But there are many opportunities to shift the balance of power toward communities, such as reconsidering the language and images we use to discuss people.
This isn’t an all or nothing approach. For lots of reasons, it’s not always possible to meet gold standard levels of participation. That shouldn’t stop us from striving to be thoughtful, to make provisions, and continue pursuing principles of inclusion and participation as much as possible. Through our efforts, we can make positive shifts towards more equitable working relationships, programs, outcomes, and, over time, societies.