What Triple Negative Breast Cancer Research Reveals About Leadership

I've spent the last several weeks helping prepare for a conversation we're hosting on Triple Negative Breast Cancer (TNBC) research and reaching the right patients for research studies. Like many people, I started where most of us start, I began reading.

I wanted to better understand TNBC, the patients most impacted by it, and the realities surrounding the disease. As I dug into the data, I found what many researchers, healthcare professionals, and patient advocates already know. Black women are disproportionately impacted by TNBC. Outcomes continue to differ across populations.

Representation in research matters.

None of that surprised me.

What surprised me was where my mind kept going.

It wasn't recruitment. It wasn't patient engagement. It wasn't even research participation. Instead, I found myself thinking about the people making decisions before any of those things happen. I thought about the researchers designing studies, the sponsors funding them, the executives approving budgets, and the leaders determining priorities.

I kept coming back to the people sitting around conference tables making decisions that will eventually touch the lives of patients they may never meet.

TNBC is not a mystery. We've known for years that Black women are disproportionately affected. We know representation in research matters. We know diverse participation strengthens science. And we know that when communities are excluded from research, the consequences extend far beyond those communities. The science becomes less complete. The data become less representative. The findings become less applicable. Ultimately, our ability to deliver the best possible care suffers.

We know these things.

The data answered those questions years ago.

So perhaps the more important question isn't whether representation matters. Perhaps the question is what leaders do when they know it matters.

What happens when the evidence is clear, but acting on it becomes complicated? What happens when priorities compete, budgets tighten, political winds shift, or inclusion becomes controversial in some circles and inconvenient in others? What happens when doing the right thing carries a cost?

Because every leader eventually arrives at a moment where values stop being statements and start becoming decisions.

And decisions have consequences.

Some consequences are immediate and visible. Others are slower, quieter, and harder to measure: a study site that never opens in a community that could have benefited, a patient who never hears about a research opportunity, an eligibility criterion that unintentionally excludes people who reflect the realities of a disease, or a perspective that never makes it into the room where critical decisions are being made.

These things rarely make headlines. They rarely appear in quarterly reports. Yet over time, they shape who feels seen, who feels considered, and who continues to feel invisible.

As a Black woman, I don't feel I have the luxury of viewing these conversations as purely academic. The statistics represent people. Families. Communities. They represent women trying to navigate one of the most frightening experiences of their lives while trusting that the systems designed to help them have considered their realities.

That trust matters.

And trust is not built when enrollment opens.

We often talk about trust as something that must be earned from communities. But trust is built much earlier. It's built when leaders decide whose perspectives belong at the table, when communities are considered before protocols are finalized, and when representation is viewed not as a recruitment strategy, but as a responsibility.

One of the things I find most interesting about the lessening conversations surrounding Diversity, Equity, and Inclusion is that they have revealed something we don't often discuss. When inclusion is expected, many organizations embrace it. When inclusion is required, many organizations support it. But when inclusion becomes difficult, controversial, or costly, we learn what people truly believe.

We learn whether representation was a value or a strategy.

Whether community engagement was a commitment or a campaign.

Whether inclusion was embedded into the work itself or simply attached to it.

To be clear, this is not a criticism of every organization that has adjusted its approach. The realities facing research organizations, sponsors, and healthcare systems are complex. Clinical research exists at the intersection of science, business, regulation, and human need. Those realities cannot be ignored.

But neither can the people who bear the consequences of our decisions.

Every protocol eventually becomes personal to someone. Every enrollment target represents a human being. Every research breakthrough we celebrate is connected to lives we may never know.

That is why I keep coming back to the same thought: Patient engagement does not begin when a study reaches a community. It begins when leaders decide whether that community is worth considering in the first place.

As we prepare for our upcoming Trial & Error conversation on Triple Negative Breast Cancer research, I hope we are willing to sit with that idea for a while. Not because it is comfortable, but because the questions that matter most rarely are.

And because for the people whose lives depend on the decisions we make, the stakes are far too high for us to look away.

About This Piece

This article is written from my personal perspective and reflects my own observations, questions, and opinions. While published on PEP!IN's platform, the views expressed here are solely my own and do not necessarily represent those of PEP!IN, its affiliates, partners, sponsors, speakers, or contributors.

My hope is not to provide definitive answers, but to encourage thoughtful conversation about leadership, representation, and the decisions that shape research long before patient engagement begins.