Data For Equity Part 1: Data Access is Health Equity
At RHI, we believe that meaningful access to data is a matter of health equity.
In many rural communities like ours, the first barrier to data access is that the data simply doesn’t exist. Too often, we find ourselves relying on national or state-level datasets that either exclude our communities entirely or smooth over the details of local experience. When local data isn’t collected, or isn’t collected with enough detail to show what’s happening across different groups, we can’t see the disparities that exist, let alone address them. If we don’t count people, we risk making them invisible in policy and practice. This is especially true for marginalized groups whose experiences are often left out of broad-scale surveys. Without robust, place-based data that reflects the reality of their lives, our systems are flying blind.
The problem of data access goes deeper than data collection. Even when local data is available, it’s often locked behind technical tools, jargon, or formats that limit who can actually use it. If we are serious about addressing disparities in health and wellbeing, especially at the local level, we need to ensure that data is not just nominally “available,” but truly accessible in ways that support self-determination, trust, and action.
That means making sure community members, local agencies, and advocates can understand the data, see themselves in it, and use it to inform their own priorities. It means recognizing that people are already experts in their own experiences and that data should be a tool they can combine with that expertise, not something used to override it.
What We Mean by “Meaningful Access”
It’s not enough to publish a dataset online and consider the job done. Truly accessible data meets several criteria:
Publicly Available: the baseline is that data, even if it is summarized, is easy to find and free to access.
Usable Across Formats: People need to be able to access data on multiple platforms and in formats that suit different users, whether as raw spreadsheets, interactive dashboards, or visual summaries.
Legible to Different Audiences: Data must be presented in ways that make sense to both technical experts and community members. That includes accommodating different levels of data literacy and language access.
Actionable: Data should support real-world decision-making, by individuals, organizations, and systems.
Contextualized: Without the story behind the numbers, how the data was collected, what it means, and what else is happening in the community, we risk drawing conclusions that aren’t grounded in reality.
Data as One Piece of the Puzzle
Health equity is about more than evidence. It is about trust, values, and voice. We utilize the ideals of harm reduction, which teaches us to value lived experience and to recognize people as experts in their own lives. In that spirit, data should not be used to replace community knowledge, but to supplement it.
When people have access to data that reflects their reality, and that they can interpret alongside their own experiences, values, and needs, they are better positioned to make decisions for themselves, their families, and their communities. Our role is not just to provide numbers, but to help make sure that those numbers can be used in meaningful, affirming, and non-coercive ways.
Why Local Data Matters for Health Equity
Without robust local data infrastructure, communities are often left relying on national datasets to inform their priorities. But national data doesn’t always capture what’s happening on the ground. Local disparities can be masked in the averages. Needs can be mischaracterized or overlooked entirely.
That’s why we invest in tools like our annual Youth Survey, which collects detailed data on race and ethnicity, sexual orientation and gender identity, disability, mental health, healthcare access, and social determinants of health from every 7th-12th grader in our county. These data allow us to spot emerging disparities, track trends, and work with partners to tailor our interventions, especially for youth experiencing the most systemic barriers.
Reframing How We Share Data
Our Youth Survey has long been a core part of our work. It’s been used in countless projects and grants, by us and by partners, but for a long time, it wasn’t truly accessible to everyone. Only a small group of people could understand and apply it. That needed to change.
As we launched the new version of the Youth Survey and transitioned from CACTC into RHI, we rethought how we communicate our findings. We redesigned our reports to do more than summarize results. We want them to:
Clearly communicate findings and tie them to real-world action
Humanize the data, connecting numbers to lived experience
Build data literacy, especially among people who may not “speak data”
Lift up community expertise, highlighting the work already being done
Equity in Access Means Equity in Use
At its core, this work is about making sure that everyone, not just policymakers or data analysts, can access and use information that matters. That’s what data equity means: not just publishing datasets, but creating tools that support inclusive, community-centered decision-making.
If we want a healthier future, we have to build systems that trust people, share power, and make sure everyone has the information they need to act on their own behalf. That’s what it means to say that data access is health equity.
This article is part 1 of our series Data for Equity.
