For Dr. Eugene Manley Jr., the healthcare system became personal long before he became a biomedical scientist and patient advocate.
Growing up in Detroit as a first-generation student with chronic asthma, Eugene spent much of his childhood in hospitals. Those experiences sparked an early curiosity about medicine and the human body but years later, his own experiences navigating healthcare would show him just how difficult the system can be for patients who are poor, underserved, or underestimated.
After reconstructive surgery, Eugene experienced firsthand what he describes as medical racism and a lack of patient agency. Despite having a comprehensive post-surgery plan with his surgeon, he says hospital staff made decisions about his care that conflicted with that plan, questioned his ability to pay, and documented information he believed was inaccurate. The experience pushed him to learn how patients can read and challenge their medical records, navigate insurance, file complaints, and advocate for themselves when the healthcare system isn't listening.
But Eugene's work extends far beyond individual patient advocacy. He argues that healthcare disparities can begin far upstream of the hospital or clinical trial, in the basic science used to develop treatments in the first place.
From the diversity of cancer cell lines used in research to the populations represented in genomic databases and clinical trials, Eugene explains why a lack of representation can ultimately affect how well medical discoveries work for the people who need them most.
Episode Highlights
- Why healthcare disparities can begin long before a patient enters a clinical trial, including gaps in basic biomedical research and the populations represented in scientific datasets.
- The importance of diversity in cancer research, including Eugene's work examining the representation of racial and ethnic groups in cancer cell lines.
- How clinical-trial enrollment remains disproportionately unrepresentative, and why simply creating a therapy isn't enough if the research doesn't adequately reflect the patients who will use it.
- How patients can become stronger advocates for themselves, including reviewing medical records and having a trusted proxy help navigate care when they're unable to advocate effectively.
- What patients should ask about clinical trials, including whether trials are available for their specific cancer or biomarker and what participation will actually require.
- Why biomarker testing and patient navigation matter after a cancer diagnosis, particularly when patients are trying to understand an increasingly complex treatment landscape.
About Dr. Eugene Manley Jr.
Dr. Eugene Manley Jr., PhD, MS, is a biomedical scientist, engineer, patient advocate, and the Founder and CEO of the STEMM & Cancer Health Equity (SCHEQ) Foundation. His career spans biomedical research, engineering, nonprofit strategy, workforce development, and cancer health equity.
His personal experiences with healthcare—along with what he witnessed while helping his mother navigate the medical system—have shaped his commitment to making healthcare information more accessible and increasing representation throughout STEMM and cancer research.
Through SCHEQ, Eugene works to increase STEMM workforce diversity while developing programs and resources designed to help underserved communities better understand and navigate medical and cancer care. The foundation also brings together patients, caregivers, researchers, clinicians, payers, and healthcare systems to focus not only on identifying disparities, but on developing solutions that can actually move the needle.
Pull Quote
“The problem is actually lying way upstream, which is even in basic science, just our bare bones understanding of biology, of medicine is already biased.”
Resources Mentioned
- STEMM & Cancer Health Equity (SCHEQ) Foundation — Eugene's organization focused on STEMM workforce diversity, cancer health equity, and helping underserved patients navigate medical and cancer care.
- ClinicalTrials.gov — A database of clinical studies that patients can search when exploring potential trial opportunities.
- Biomarker / NGS testing — Discussed as an important step for patients with cancer to better understand potential treatment options and relevant clinical trials.
- Patient and nurse navigators — Healthcare professionals who can help patients understand and navigate the cancer-care journey.
- Medical records — Eugene emphasizes the importance of reviewing records and addressing inaccuracies when they occur.
