How California’s wealth of open data can empower communities and storytellers

[The following post originally appeared on the CHCF Blog.]

Whenever they wanted to play outside, the kids who lived between Highway 41 and the Cargill meat processing plant in Fresno gathered at a vacant overgrown lot on Almy Street. Today that desolate lot has been transformed into a lively community playground and park — a new anchor in the neighborhood known as the 41 and North Corridor — because of community organizers who imagined new ways to use data and stories to make their case to local officials.

The community was accustomed to being disappointed by Fresno's leaders. Local organizers there knew the city was reluctant to add new parks because of concerns about maintenance costs. But public officials changed their minds in part because of important facts that sprang from the imaginations of the kids — not from county departments. Community organizer Sabrina Kelley and her colleagues at Habitat for Humanity asked local children to draw pictures of their dream playgrounds. Habitat for Humanity then took these pictures, coded them (they noted such things as how many slides the kids wanted), and turned them into compelling arguments. Teenagers went door-to-door to conduct homeowner assessments, and the community created indicators of livability and walkability. These organically generated data were harnessed to make the case. Of course, traditional measures like mortality rates and environmental dangers are readily accessible in Fresno — and the 41 and North Corridor ranks poorly on all of these indicators, a point that the health department has been making. In the end, however, it was the home-brewed numbers developed by the neighborhood that resonated with local elected officials. You can see how the neighborhood went about its community betterment in this video.

Recently, I joined staff from California's Health and Human Services Agency (CHHS) for a tour of Fresno organized by civic leaders, and it underscored why open data matters so much. The aim of open data isn't merely greater transparency through dissemination in the public sphere. Nor is it just about building innovative apps from these data sets, which often is how open-data work is framed. Open data, to my mind, is about empowering communities with numbers presented in useful ways that can help fuel real-world change. It's about informing policymaking with evidence so that we can make wiser decisions. Open data means partnering with communities that have their own data to share. It represents an opportunity to elevate public discourse through facts that are communicated in ways that resonate with all of us.

This is a good time to take stock of the open-data movement in California. Progress has been swift in our state's capital in freeing state health data. On March 14 and 15, the third annual Open DataFest — an event that CHCF founded and still supports — is being held in Sacramento. In a few short years, CHHS has gone from debating whether even to launch an open-data initiative to managing a robust open-data presence that includes more than 150 data sets and participation from the sprawling agency's 12 departments.

The culture change that accompanied this data transformation has been stunning. A few years ago, when I traveled to Sacramento from my home in Silicon Valley, the digital divide between the capital of innovation and the capital of our state was so much greater than the physical distance. California seemed to be behind the times technologically. Now, CHHS seeks out partnerships with organizations from the civic tech sector, including Code for America, to help government embrace innovation. Likewise, the agency today is eager to better harness its data in savvy ways, both to support internal programmatic decisionmaking and to encourage external use by data users.

Given CHHS's success, it's fair to ask whether it's time to declare "mission accomplished" and let the state's open-data program roll on with its own momentum in the form of an ever-increasing number of freed data sets. I don't think we're there yet. I'm not worried about CHHS's capacity to keep things moving forward. The open-data floodgates already are wide open, and a bridge to external constituents has been built, thanks in part to programs like the CHCF-funded initiative to place local health data ambassadors in cities across the state. I'm more concerned about the rest of us meeting the state more than halfway across that bridge.

After all, government's role with open health data is important but limited. It publishes aggregated, de-identified measures in ways that are easy to access. It's up to the rest of us to take it from there — that is, to use data in engaging ways that activate local communities. That's what community organizers did in Fresno's 41 and North Corridor — they fortified standard government measures with data generated by the community.

Similarly, why can't the health measures that governments release be packaged as engaging data briefs — on pressing public health issues like opioid abuse — to inform elected officials about area conditions and policy options? And these same data, bolstered with stories that resonate with the community, can be harnessed in partnerships between health departments and on-the-ground nonprofit partners. Local partners, after all, can provide wise guidance and draw upon their connections to help government communicate data in engaging ways (e.g., via local popup events, not brochures or PDF reports) to raise public awareness of issues and push for improved health behaviors.

Given our collective charge to step up to the plate, what specifically can we do to capitalize on the treasure trove of data the state is making available? Here are some thoughts from the time I've spent learning what's worked in communities across the state:

• We need to involve those on the front lines — doctors, elected officials, community organizers — to let us know how they want to use data in their lives and work. When we pause to take the time to ask users about their needs, not only can they help us identify problems with leveraging data in their work, they can sketch out solutions that describe how best to package information in ways that activate them. Unless we walk in the shoes of people who can be empowered by data, we run the risk of building data tools that do too little to meet the needs of users.

• We need to focus on communicating data more effectively, not just freeing data sets. We used to expend so much energy finding and analyzing data that we had little left in the tank for the important job of telling stories with data and disseminating the results to our audiences. In the 41 and North Corridor, for example, they knew that even home-grown data wouldn't be enough to persuade elected officials, so they bolstered their facts with stories from people in their community. That was a wise approach. Data shouldn't be disconnected from the individual story; we would do better to integrate the heart and the head so we can effectively engage with data.

• We not only need to cultivate a corps of volunteer civic coders willing to use their skills to improve life in California, we need to enlist designers and writers to ensure that data are packaged in ways that truly matter to communities.

• We must share lessons about how we're effectively using data to engage and activate communities to achieve social impact. There are tools and resources to help with the once-challenging tasks of finding and visualizing data, and now that we have the time to be creative and resourceful, let's learn from each other about what is and isn't working.

• Let's help the state health agency engage with us. I know from inviting them that they want to come to our events and want to learn about our needs and how we use health data. California is too huge for officials in Sacramento to know all that's going on or to initiate meetings. Don't wait for them to reach out — let them in on what you're doing and how you want to involve them by contacting opendata@chhs.ca.gov.

I take these recommendations so seriously to heart that I've decided to roll up my sleeves and join in the nitty-gritty open-data work. After 13 rewarding years in philanthropy — including the last four at CHCF helping to fund improvements to California's health data ecosystem, I'm joining a civic startup that helps governments, nonprofits, philanthropies, and others achieve social impact through better engagement and communication of data. It won't be easy leaving an organization and a field that's been so gratifying, but I'm looking forward to working with communities like Fresno that are filled with good ideas for how to paint pictures with data in ways that will help their people live better lives.

If you're still not certain that stories told by data can make a difference, ask the kids at the new park on Almy Street.

The California HealthCare Foundation funds the Center for Health Journalism’s California Data Fellowship.

[Photo by opensource.com via Flickr.]