CU Anschutz expert makes a call for disaggregation of data during CCTSI summit
Research in health equity and social determinants seeks to understand disparities and affect real change, yet the national data collection systems investigators rely on for their work are incomplete and hardwired for structural racism, Shale Wong, MD, told attendees of the 10th annual Colorado Clinical and Translational Sciences Institute academic summit on Sept. 14.
"If we depend on these systems, we risk informing policy with inaccurate data that continue to perpetuate inequities," said Wong, who is the executive director of the Eugene S. Farley, Jr. Health Policy Center and professor and vice chair for Policy and Advocacy in the Department of Pediatrics at the University of Colorado School of Medicine.
In her talk, "Mental Health Equity: How is Data Shaping Policy?" Wong addressed the challenges of using data to inform policy and described how policy influences data collection.
Wong gave a short overview of the Farley Health Policy Center at the CU Anschutz Medical Campus, where she and her colleagues work to develop and translate evidence to advance social policies to improve health, equity and well-being.
"Many disparities that exist are due to structurally flawed systems that create barriers to care," Wong said. "The way we see it, local, state and federal policies are responsible for and have some authority to reshape and dismantle systems of structural racism because policies may prevent individuals and communities from living their healthiest lives."
Wong shared key findings from the groundbreaking report, "The Economic Burden of Mental Health Inequities," which was released on Sept. 12 by the Farley Health Policy Center, the Satcher Health Leadership Institute and the Robert Graham Center.
"This study intended to answer two questions: How many lives and how many dollars could be saved if we addressed racial inequities?" she said.
In a five-year study period, racial inequities in mental and behavioral health accounted for the premature deaths of nearly 117,000 indigenous people and people of color in the U.S. Additionally, racial inequities generated more than $278 billion in excess cost burdens.
An invisible population
"While these numbers are horrifying and will get some attention, what may be more important is what we missed and were not able to see," Wong said.
She also revealed that national estimates and publicly-available data sets excluded at least 5.8 million people - many of whom carry the heaviest load of mental behavioral issues: the incarcerated; the unhoused; active military; and those in nursing homes and assisted living and psychiatric facilities.
When report authors analyzed published literature, a gross misrepresentation of the actual burden of these inequities was uncovered. The authors discovered an estimated $63 to $92 billion in annual excess costs from mental illness and substance abuse disorder among the incarcerated and unhoused.
Policy to drive equity, improve data collection
Wong said overarching principles must be put into place to begin to balance inequities in behavioral health through policy.
"If you look at existing policies, there is stigmatizing language throughout that systematically needs to be removed and re-addressed as new policies are written," she said. "There's a choice - you either maintain the policies that perpetuate inequities, or you take new policy actions to reduce it."
As a multi-racial individual, Wong said most general health screens force her to choose one category, identifying as "Asian." Yet Asia includes more than a dozen countries, each with unique cultural origins and distinctions.
"We lose the specificity when we categorize for convenience," she said. "When we can begin to disaggregate the data - getting down to cultural identity and intersectionality - we can begin to get to solutions where we can make a difference."
Wong said policy can be leveraged to improve data collection at the National Institutes of Health level. This includes requiring changes to what is asked, collected and reported on, aligning with census data, and drilling down to a much deeper level, such as language preference and country of origin.
"Then we can actually ask better questions and improve our outcomes because policy uses big data, but equity is local," she says. "We have to have the courage to call out the fact that we have been doing it wrong, that we can do more, that we can do better."
Policy Principles for Balancing Mental Health Inequities
As part of "The Economic Burden of Mental Health Inequities" report, the Farley Health Policy Center performed an analysis and environmental scan of evidence-informed state and national policies. The report provided several policy proposals, from the very large-scale investments needed, to smaller-scale ideas that can be immediately implemented to address the current and future needs.
Here is a summary of the recommendations:
- Invest in rebuilding and maintaining equitable mental and behavioral health systems for the long-term to ensure access to the right care at the right place and the right time.
- Begin with prevention, early intervention, and identification to offer a continuum of services inclusive of treatment and crisis needs.
- Establish inclusive standards of health equity and quality measures for accessible health systems, fund research to study mental/behavioral health equity, evaluate policies and track measures.
- Target interventions that build on community strength and resiliency and meet unmet needs and involve those impacted by the policy in policy-making.
- Ensure language concordant services are person-, community-, and culturally-centered.
- Systematically examine existing policies and laws to remove stigmatizing language and ensure it is excluded in new legislation.
- Recognize the impact of political and systemic power differentials on historically marginalized communities to enable policy actions toward equitable culture shifts.
Guest Contributor: Jessica Ennis is a freelance writer specializing in healthcare and academic medicine.
