The Power of Health Data in Our Work
At SisterLove, which was born 35 years ago during the HIV epidemic when Black women and other marginalized communities were often excluded from critical health data collection and public health interventions, we believe data tells our communities' stories. From early HIV prevention programs like Helping Our People (HOP) to recent initiatives like our Community-Based Research Program (CBRP) and Healthy Love Experience (HLE), we've used data to identify trends, understand challenges, and advocate for tailored solutions.
Intersectionality and human rights are fundamental to our Sexual and Reproductive Justice framework. Our CBRP, partnering with organizations like Emory University's Erase HIV Cure Research Lab, ensures equitable development of public health interventions. The HLE program uses intersectional data to provide tailored sexual and reproductive health services and education for Black women and marginalized communities.
Our Policy, Advocacy, & Mobilization Program uses intersectional health data to fight for inclusive health equity and reproductive rights. This data ensures marginalized people are accurately represented in policy-making.
Data Equity is Health Equity
True data equity means ensuring everyone has equal access to quality health data and resources to use it effectively. Black women and marginalized communities have faced significant barriers to inclusion in data collection and analysis(Bierer et al, 2022). To achieve health equity, we must close this gap and build inclusive, trauma-informed data collection models.
Consider Pre-Exposure Prophylaxis (PrEP), an HIV prevention medication. Early trials focused primarily on men who have sex with men, leading to tailored interventions for this population. However, Black women, who face disproportionately high HIV risk, were largely excluded. This resulted in inadequate PrEP education and outreach for Black women, contributing to higher HIV infection rates.
To break this cycle, we must reframe data collection, incorporating intersectionality into our models. This means ensuring diverse participation in research studies, considering lived experiences in data analysis, and developing culturally competent interventions.
The Intersection of Public Health and Health Data
Intersectionality, introduced by Kimberlé Crenshaw, considers how interlocking systems of power impact those with multiple, overlapping marginalized identities. This lens provides a clear vision of the sociocultural conditions perpetuating health disparities.
For us, intersectionality is a tool of investigation and repair. It allows us to serve our communities in ways that recognize their essential dignity. This approach builds trust, enabling advancements in public health to reach those who can benefit most. Health data that inculdes diverse, marginalized and often exlcuded populations from reseach studies allows for incredible advancements in public health interventions, medicine, and technology to reach those who can benefit most from it (Hamoonga et al., 2023).
Generative AI in Health Data: A Double-Edged Sword
Generative AI holds potential for reshaping health data collection and analysis. However, there's well-documented evidence of AI algorithms discriminating against Black people and other marginalized groups. A 2019 study found that a widely used algorithm was significantly less likely to refer Black patients for extra medical care than white patients with the same level of need.
This is not just a technical issue; it's a moral and social failure that threatens to erode trust between marginalized communities and public health institutions. To address this, we need:
1. Diverse and representative data collection
2. Inclusive AI development teams
3. Community involvement in AI-based health service design
Why the 2024 Health Datapalooza Matters
2024 Health Datapalooza offers a unique platform to bridge public and private sectors, ensuring technological advancements, including AI, benefit all communities.
As innovation accelerates, the conference's focus on data-driven solutions becomes increasingly crucial for addressing critical public health challenges, from the HIV epidemic to the Black maternal health crisis. Remember, health data isn't just numbers—it's about people, their struggles, and their right to live with dignity. This year's conference presents an unprecedented opportunity to shape a more equitable health care landscape. Join us at 2024 Health Datapalooza to contribute your expertise, learn from diverse perspectives, and collaborate on inclusive, data-informed solutions that can transform public health for all communities. Together, we can turn data into action and create a healthier, more just society. We’ll see you at Health Datapalooza on September 16-17 in Washington, D.C. Learn more and register here.