Today we are delighted to release our report Rising Equitable Community Data Ecosystems (RECoDE), The Voices We Trust: Building Equity-Centered Community Data Ecosystems That Work for Everyone. With generous support from the Robert Wood Johnson Foundation, this report is the culmination of a one-year project, in collaboration with four partner organizations, strengthened by twelve Learning Council Members, and informed by nearly five hundred people representing communities across the United States through a survey, individual interviews, workgroups, and a convening. Together, we conversed, convened, and ultimately co-created actionable recommendations for building equitable community data ecosystems.
RECoDE was launched in partnership with data.org, Data Across Sectors for Health, Health Leads, and the National Alliance against Disparities in Patient Health. The project aimed to better understand how to undo antiquated and dangerous data systems and build in their place an ecosystem that provides all communities power over where, when, and how their data is used to improve individual and community outcomes. The process of this project has had a deep impact on considerations and practices at data.org, providing us with a renewed sense of purpose in building the field of data science for social impact (DSSI). The insights from RECoDE interviewees and workgroup members have helped guide who we are and how we think about the work that we are doing in the short and long term.
“There is a reticence to admit that one was ever wrong and that doesn’t fly with communities that have been just very, very plainly shoved aside or disregarded or disrespected. You can’t come in like that, you have to be able to say when you’ve done wrong and if you can’t, that’s just no foundation for trust.— RECoDE Interviewee
Through this year-long project, we listened to community members that are most impacted by inequitable data systems. Our report is the amalgamation of these voices, and an act to amplify long known and felt truths. What we heard on what matters most, above all other priorities, was trust. RECoDE’s findings bring critical relevance across organizations and sectors: without trust, true partnership is not possible, and without true partnership, we will continue to build systems rife with the inequalities that perpetuate health and economic disparities.
Solutions cannot be built in isolation in Silicon Valley, New York, or Boston, and parachuted into local communities; we have seen this ineffective approach time and time again. Co-creation, genuine partnership, and a fundamental re-balancing of existing power structures will enable healthy, inclusive community data ecosystems. At data.org, we have held this principle core to our work. For example, in our global initiative Epiverse, we are co-creating a trustworthy, open-source software ecosystem to power epidemic preparedness. From the outset, we committed to developing tools with local communities, building on the knowledge and capabilities of those most impacted by inequities in global health. In partnering with teams in The Gambia and Colombia, and through a fully representative, global open-source community, we are not only building trust-worthy solutions, but we are ultimately building better systems, products, and outcomes.
“If you’re really trying to change people’s way of thinking, if you’re really trying to change the social context, if you’re really trying to change entire paradigms, a two-year project is not going to do it.— RECoDE Interviewee
Trust and co-creation are essential for building equity-centered community data ecosystems, but trusted partnerships are not developed overnight. A fundamental principle for doing this work well is to slow down, listen, and hear the voices of the community, to move slow and fix things. This approach requires significant resources—including money, people, and time—and with the need for more resources comes the need for funding. To build equitable data systems, we must examine the current funding structures that can empower or interfere with this work. Too often, progress is halted by short funding cycles, and success is measured by excessive emphasis on specific funder requirements – an approach that disables systemic changes and does not reflect the priorities or needs of the community. Co-creation is paramount to each project cycle stage, including co-creating funding priorities. RECoDE calls for partners and funders to lean on the expertise of grantees and shift towards community-led, long-term projects that will support and sustain community led social impact organizations using data to realize impact.
None of this work will be possible without investment in local capacity. This starts with recognizing and funding existing work that is often undercompensated. Throughout the course of this project, it was striking how many people could identify someone in their community who goes above and beyond to make this work possible, the person who is coordinating partnerships with the food bank, the hospital, the women’s shelter on top of their official role. We can often point to the linchpins of community data ecosystems – but are they adequately supported so that they can sustain their work? Systemic change will also require many more people with data skills – from data literacy to data analytics to data science. We have an opportunity to invest in the professional development of a more diverse data workforce through upskilling existing workers and expanding the pipeline of new talent to reflect the diversity and lived experiences of our communities. Let’s rethink how data skills are taught and make this skillset more widely available. Through data.org’s Capacity Accelerator Network, we aim to train 1 million purpose-driven data professionals by 2032, and we believe that this goal will be met by a mix of locally-driven efforts and tools and resources that can be shared and adapted across a global network.
How do we know that the work that’s happening is impactful and isn’t just a service that doesn’t result in anything? That it actually has an impact on someone long term, that it’s sustainable, and that it’s sticky?— RECoDE Workgroup Member
data.org is a platform for partnerships to build the field of data science for social impact. As an organization we are both funders and grantees, we are partners, matchmakers, and public conveners. In this hybrid position, we have the unique and privileged opportunity to look at DSSI initiatives and data ecosystems from varying vantage points. We believe that our role following this report is to be the splash that causes a rippling effect – aiming to influence our extended network to make the necessary paradigm shifts that our RECoDE work demands. As we stated in the report, these are not radical ideas. But they require radical action. We hope that you will download, read, and share the RECoDE Report, and join us in the work of building equitable data ecosystems that improve health and wellbeing for all.