Data is something that we have all become increasingly familiar with, especially over the past year. We use data to inform our opinions and make decisions. When we look at the spread of disease and incidence rates, we inform our actions surrounding isolation and hygiene. Our brains are computers that are constantly taking in massive amounts of information and using that information to make personal decisions. When we talk about society-level data collection, the process is no different. The challenge, however, is how to make decisions in the absence of reliable data.
At its root, data is about storytelling. When you read data, you grow your ability to understand your community, and to be critical with your decision making. Looking for the story that data tells leads to questions about the data. How was it collected? Who was involved? Who wasn’t involved? What’s missing?
Louisville Youth Group Inc. works with LGBTQIA+ youth and young adults. A statistic that we are familiar with states, “LGBTQIA+ youth are five times more likely to attempt suicide than their straight peers.” (source) When you investigate the story behind this statistic you discover stories of isolation and loneliness. You learn about youth who are rejected by their peers and their family, and often find themselves without a home. It’s a story about hopelessness, and loss in our communities.
The beauty of this statistic is that it can direct you to a problem that needs to be fixed. LYG leveraged data to create intervention programs for youth with other peers and adult mentors to create community and bonds that reduce loneliness and hopelessness. Thanks to data, we know the importance of helping parents understand and accept their children, and educating our communities to make them more inclusive.
Data also enlightens us on who and what might be missing from the story. We can look at this particular statistic and ask how other identities or circumstances might adjust the results. What happens when we layer additional data like economic status, race, neurodivergence, or citizenship onto the existing data? Continuing to engage with data as a living story helps us assess the effectiveness of our interventions and to make adjustments, or create new tools as we discover new information.
One of the most impactful ways data affects the world is how it’s used to set public policy and direct government decision making. 2020 is the year of the U.S. Census. A once every 10-year survey, it covers a wide array of topics from age and demographics, to employment and religious affiliation. A great deal of discussion goes into what questions are included in the census because the questions asked are really about the stories that can be told. The information collected is used to inform policy and budget decisions made by our federal government for the next 10 years. When something is not included in the census, it cannot be accurately or appropriately considered in policy-making and budget allocation for at least 10 years- until the next census.
This is a prime example of missing data, and how it can have a significant impact on our communities. After extensive debate, it was decided to not include questions that would collect data on LGBTQIA+ identities. This decision tells our community that our story doesn’t matter.
Missing data means that there are missing voices. Sometimes they are the voices of relevant facts or dynamics that could drastically alter interventions or public policy. The absence of the LGBTQIA+ voice in the census creates the risk that we’ll lose rights like inclusive workplaces, access to quality healthcare, the ability to marry our partners, and the safety of our children in our schools and communities. It changes the narrative of our community’s story, and alters the future story of our nation.
Missing data places the burden of responsibility on the communities who are already being excluded. It means shifting time, money, and resources to collecting the data needed to advocate on behalf of our communities, and away from programming, services and other interventions. The current systems used for collecting data force organizations to survey and research their clients to the extent that clients stop using their services, and we lose the impact of our interventions. Data is a powerful tool that’s used to assess the health and wellbeing of our communities, and more importantly it helps to shape and tell our stories. If we’re to truly make an impact on communities, we must continue to find the gaps in our data to better identify and meet the needs of our neighbors and loved ones.
Taylor Young is an epidemiologist at Louisville’s Center For Health Equity, and a Master’s student at the University of Louisville’s School of Public Health and Information Sciences. Taylor graduates in May 2021 and hopes to pursue a career in Global Health.
Jason Peno is the Executive Director for Louisville Youth Group Inc. Louisville Youth Group Inc. creates a brave space for LGBTQIA+ Youth and Allies that promotes personal and community growth through relationship building, leadership development, and social justice activism.
Jason and Taylor live together with their dogs, Ruby and Blue, in Louisville, KY.