Understanding Health Equity Research w/ Kevin Sykes, PhD, MPH | BackTable ENT Podcast Ep. 152

Dr. Sykes is a cisgender white man whose lived experience does not always reflect the experiences of the communities he works in, which may introduce bias into his thoughts, writing, or work.

Life expectancy varies dramatically by zip code; in Dr. Sykes' current work area, two zip codes have a mean life expectancy of 68 years, one zip code north it increases to 76 years, and two zip codes north it jumps to 90 years.

Life expectancy differences across zip codes are linked to socioeconomics, race, ethnicity, education levels, healthcare access, historical redlining, and segregation of communities.

When racial categories are aggregated into groups (e.g., 'white, African American/Black, and everybody else') for statistical reasons, this hinders the ability to see health inequities within Asian communities and American Indian populations.

If diversity is absent from clinical trials, we cannot be confident that interventions are effective for all populations or that the data generated are generalizable.

Large databases like the National Cancer Database or SEER are not fully representative of safety net community hospitals or areas where historically minoritized communities seek care.

Using community health workers as part of recruiting teams helps reduce cultural barriers to research participation because they understand their population better than academic researchers do.

Health equity research takes more time and requires budgets that include appropriate compensation for participation and recognize transportation barriers to arriving at healthcare centers.

Community health workers should be included as full-time equivalent key personnel on research grants, not paid $40 per hour only when they show up, because they contribute to study design, recruitment, analysis, and dissemination.

If a researcher does not intend to disaggregate data by race to examine outcomes, they should not collect race data because it will either bias the analysis or create confusion.

Researchers should not use race as a proxy for socioeconomics, racism, or other forms of oppression; instead, they should directly measure those constructs.

Health equity research requires accepting lower statistical power to achieve reasonable recruitment goals within budget and time constraints, rather than sacrificing population diversity to meet recruitment targets.

Survey materials must be available in multiple languages, make sense in low-literacy settings, and be administered in private settings when asking about socially undesirable behaviors (drug use, etc.) to avoid making participants uncomfortable.

A validated survey instrument may not be valid in a population different from the one in which it was originally validated; researchers must validate instruments in their target population.

Qualitative research provides depth that quantitative research lacks; when researchers sacrifice depth for breadth, they often miss the point of why disparities exist.

Semi-structured interviews allow questions to flow conversationally rather than in a fixed order, which is important for understanding the depth of someone's experiences.

There is data to support that Black and African American individuals choose surgery less often than other populations in the context of head and neck cancer, a nuanced question requiring in-depth qualitative interviews to understand.

The goal of qualitative research is exploration of a concept or phenomenon, not generalizability; it informs how to design quantitative studies and ask questions in ways that capture the experiences of diverse populations.

Qualitative analysis involves verbatim transcription, field notes documenting emotional moments, independent coding by two reviewers, identification of themes, thematic saturation when no new themes emerge, and member checking with participants to validate findings.

Research is about building relationships with participants; without proper relationships, researchers cannot be confident that the information participants provide reflects their true experience.

Physicians are particularly well-positioned to advocate for marginalized populations with policymakers because policymakers will listen to them.

In Indiana, researchers used county-level life expectancy data to secure bipartisan support for sustained public health funding by arguing that investment in public health can improve outcomes, similar to how investment in education improved educational outcomes.

Medical students today are more sensitive to health equity issues because media and globalized society expose them to differences in quality of life and the plight of others in different parts of the world.

Medical education needs to include health equity researchers speaking to students, inviting them to grand rounds, and changing morbidity and mortality conferences to include questions about health equity.

The inaugural GSK Health Equity grant aims to establish an expert consensus on a uniform data set for health disparities measurement in head and neck cancer, identifying the most meaningful, relevant, and practical data points everyone should collect.

The GSK grant's second aim is to apply the uniform data set in a prospective multi-center observational study at 6 centers to determine if it can predict higher stage of presentation with head and neck cancer, with secondary analyses examining discontinuity of care and timely radiotherapy after surgery.

The GSK grant project uses a pragmatic design to assess not only model performance but also implementation barriers, aiming to identify variables that are meaningful but impractical to collect before launching a widespread national project.