The 80% problem: Inside Northwell’s mission to democratize cancer clinical trials

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Two years ago, New Hyde Park, N.Y.-based Northwell announced a partnership with the START Center for Cancer Research — a global network of clinical trial sites — to expand early phase clinical trial access in New York. The first site, the $5.7 million Northwell-START New York-Long Island early phase clinical trial facility in Lake Success, N.Y., opened in December. A second Northwell-START Center is expected to open in New York City’s Manhattan borough in 2027.

The expansion is the most visible sign yet of a broader institutional push: to make Northwell the model for how a community-rooted health system can democratize access to clinical trials at scale.

One of the driving forces behind that mission is Richard Barakat, MD, physician-in-chief and executive director of the Northwell Health Cancer Institute, who shared more about the system’s strategy at Becker’s Oncology Executive Summit in April.

“Clinical trials are the standard of care. We have 72 NCI-designated cancer centers in the country providing access to 20% of cancer clinical trials,” Dr. Barakat said. “The remaining 80% of that care is delivered in the community. Those patients deserve the chance of having the best outcome as patients who, for lack of a better way of saying it, know how to get to the front of the line. There are people who know the system and who know how to work it. My job is to help those that don’t.”

With 28 hospitals and more than 120,000 employees, Northwell is the largest healthcare provider and largest private employer in New York. The cancer institute cares for patients at 14 centers across the New York City area, from Long Island to Manhattan.

Northwell’s geographic footprint translates to a highly diverse patient population, presenting the opportunity to generate more comprehensive clinical trial data alongside the responsibility to provide equitable access to care.

Underserved minorities currently make up 36% of the patients enrolled in cancer clinical trials at Northwell, a statistic Dr. Barakat said mirrors the health system’s patient population. This benchmark was not achieved without challenges, however. Take, for example, Northwell’s recently opened cancer center in Queens, where Dr. Barakat was raised. 

“Queens is the most ethnically diverse community in the world with 130 spoken languages, more than English and Spanish,” he said. “How do you consent a patient in Russian or Urdu or Farsi or Tagalog or Arabic?”

One of the things Northwell does to reduce the likelihood of language barriers preventing access to clinical trials begins during hiring. 

“When we hire doctors, nurses and staff in Queens, if we have an opening and need somebody who speaks Mandarin, we look for that first,” he said. 

A more difficult barrier to overcome is the decades of harm some underserved communities have experienced at the hands of U.S. healthcare providers. A mistrust that bleeds into a broader misunderstanding of clinical trials, of which a recent study found almost 30% of people were suspicious.

Northwell’s strategy for building trust within underserved communities in the health system’s patient population starts with “owning the past,” Dr. Barakat said. 

“We understand why they’re anxious,” he said. “We know Tuskegee. We know Henrietta Lacks. We understand that patients don’t want to be a guinea pig.”

The importance of building trust with patients lies not in data collection, but in clinical outcomes.

“We know for some groups, outcomes are worse in certain diseases. There has to be a reason for that,” Dr. Barakat said. “We want to put patients on these trials because the evidence shows these trials can improve their outcomes.”

One tool Northwell relies on to build upon its 36% enrollment metric of patients from underserved communities is community engagement. 

For Dr. Barakat, community engagement means more than holding one town hall. Instead, community engagement looks like being present on a consistent basis and in a culturally sensitive manner. It also means screening every patient for social determinants of health through Northwell’s Institute for Community Health and Wellness and embedding research coordinators at each of Northwell’s 14 cancer centers to help patients navigate clinical trial enrollment. 

Northwell’s research infrastructure reinforces that community commitment. Through a strategic partnership with National Cancer Institute-designated basic cancer center Cold Spring Harbor Laboratory in Laurel Hollow, N.Y., Northwell channels significant resources into understanding the biological and genetic factors of cancer. This research informs everything from how the health system interprets disease prevalence within its catchment area to which clinical trials it pursues.

Through the research conducted through Cold Spring Harbor, the translational research done at Northwell’s Feinstein Institutes for Medical Research, the system’s clinical enterprise and now fully operational early phase clinical trial program, Northwell is positioning itself as a leader not only in expanding clinical trial access but in redesigning cancer care delivery. 

“When I first joined Northwell about seven years ago and we spoke to Ned Sharpless, who was NCI director at the time, we told him what we were doing. He said, ‘If you can achieve what you’re trying to do, you will transform how cancer care is delivered in the United States,'” Dr. Barakat said. “I wrote that down. I will never forget it. If nothing else, I have the opportunity to help transform how cancer care is delivered, then I will be very, very proud of what we’re doing.”

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