We see examples almost daily that data is power.
That’s why at the Connecticut Data Collaborative (CTData) we are working with a growing roster of partners to bring that power to the people in the data.
That means we must engage communities that are often overlooked in collecting data and left out of the development of research methods and analysis.
Here’s an example of how it can work.
We recently developed regional data stories to help behavioral health groups to understand the community at large. We included public data on demographics, education, health and housing. Then we held community conversations to share these stories in the targeted regions.
In one, a family member shared her experience of dealing with an opioid overdose situation. One of the data points in the story was data on deaths due to drug overdose. But through conversations with the community, and really digging into the data visualization with the group, we realized that data was reported by place of death, rather than by where a person was from. That’s a distinction that can make a difference. After our conversation, we reached out to the source of the data and added the additional point of view.
Our mission is to support informed decision-making. That means people need to use the data we’re providing to improve something.
And when we use data to “improve” something without the voice of the people in the data, our solutions may be solving the wrong problem, or may not be the solution. Beyond that, by involving the people in the data in the process, it is more likely that they will be able to use the resulting decisions to improve their own lives, or influence decisions affecting them. If you’re thinking that sounds like democracy, well, it is.
CTData is a public-private partnership that advocates for the public availability of open and accessible data. We provide customized data training, create customized data visualizations and interactive data tools, provide data consulting services, and support a community of data users through events and conferences. And we learn from the people who are represented in the data – how to better tell the story, and how to more effectively teach others to be critical consumers of data.
Community engagement – an essential element in our work – requires meaningfully involving communities affected by a research finding in the research process. \
A study published last year by Johns Hopkins University noted that “community engagement in research is recognized as a key process to improve the way the research is prioritized, translated, and used in a real-life setting.” The study went on to point out that community engagement is not limited to one phase or one aspect of the data collection process, but “can occur across all stages of research including identifying study topics, planning and designing the study, strengthening recruitment strategies, collecting and analyzing data, and interpreting and disseminating findings.”
This process is a two-way street. As a community learns through data, the data professionals learn about the community, which improves the data collection process. Everyone benefits.
The Hopkins study found that community engagement is an ongoing and iterative process; community partner roles must be well-defined and clearly communicated; mutual trust and transparency are central to community engagement; and measuring community outcomes is an evolving area.
Early in the pandemic, CTData was awarded a Robert Wood Johnson Foundation grant to help local communities use data to inform their COVID-19 response.
Using a University of Connecticut-developed survey instrument to assess people’s precautions and understandings of COVID-19, we then worked with three Hartford area nonprofits to help translate and visualize the survey findings for their constituents. Through a series of ‘data walks’, we helped present and discuss the findings with the people who took the survey. What happened next was interesting and informative, as we put the data in the hands of the people who were represented by the data.
A member of the Sudanese House in Connecticut said this was the first time they had seen data about themselves. Because of the way race and ethnicity data are collected, they explained, they are often made invisible in the data. Family Life Education took the opportunity to work with CTData to build their staff’s data capacity. Staff are often surveying their clients throughout the year, so a class on understanding how to use the data we create d equips them with skills for the future. And a number of women who were part of the survey implemented by the Hartford Health Initiative, after discussing the results, decided to develop a walking group, since that was one of the ways survey respondents indicated they relieve stress due to COVID-19.
Recently, CTData received a Data Across Sectors for Health (DASH) grant to launch a data-sharing effort designed to improve understanding of issues related to youth behavioral health in Hartford, and lead to changes in youth programs and policies. The project includes Youth Researchers to gain additional insight. Just underway, the initiative includes six local youth who range in age from 16 to 21, who initially participated in workshops on data literacy this Spring, and will be reviewing, analyzing, and reporting on data.
Every step of the way, at every juncture of the data development process, by involving the people and communities behind the numbers we increase the likelihood that we will learn about things that are important to them and will make the biggest difference in their lives. In often unanticipated, informative and beneficial ways, there is power in data.
Michelle Riordan-Nold is Executive Director and Sarah Eisele-Dyrli is Assistant Director of the Connecticut Data Collaborative, a statewide public-private partnership that focuses on ensuring public data is open and accessible. More information is available at www.ctdata.org.