Washington University School of Medicine in St. Louis has received a $17 million grant from the National Institutes of Health (NIH) to address disparities in cancer research, treatment and outcomes in underrepresented populations. The research, funded through the National Cancer Institute’s Cancer Moonshot program, will focus on African American patients with colorectal cancer and multiple myeloma, as well as patients of any race or ethnicity with cholangiocarcinoma, a rare cancer of the bile ducts.
The researchers want to engage directly with patients and survivors for help in designing studies, attracting participants and building a genetic understanding of these cancers in patients who, historically, have not had their genomes sequenced. And importantly, if patients decide not to participate in this medical research, the investigators will seek to understand the reasons why.
The goal of the research program, called the Washington University Participant Engagement and Cancer Genomic Sequencing Center (WU-PE-CGS), is to fill gaps in knowledge to help reduce the disparities seen in rare and understudied cancers that affect underrepresented groups.
“We’re interested in improving care for underserved communities and maximizing the potential of team science, bringing together a diversity of skills, to address these problems,” said principal investigator Graham A. Colditz, MD, DrPH, the Niess-Gain Professor of Surgery at Washington University. “We’re hoping to develop or refine strategies for improving care that are applicable beyond the specific cancers we’re focused on for this project, especially in regard to engaging populations that are underrepresented in genomic research. We also would like to determine how best to deliver genetic results to patients in ways that are accessible and useful to them and their care.”
Colditz, also director of the Division of Public Health Sciences in the Department of Surgery, explained that the program includes three major units led by investigators with diverse backgrounds and areas of expertise. They are cancer biologist Li Ding, PhD, a professor of medicine in the Division of Oncology and a professor of genetics; cancer epidemiologist Bettina F. Drake, PhD, a professor of surgery in the Division of Public Health Sciences; and surgical oncologist Ryan C. Fields, MD, the Kim and Tim Eberlein Distinguished Professor in the Department of Surgery.
Fields will lead the participant engagement part of the project, identifying patients with the targeted cancer types and determining who might be interested in participating. To aid these efforts, the researchers have established a patient engagement advisory board that includes patient advocates for rare diseases, as well as members of The Cholangiocarcinoma Foundation; Fight Colorectal Cancer; the Myeloma Research Foundation; and Rare and Black, a health advocacy group focused on supporting Black patients with rare diseases.
Two cancers that are more common and not studied enough among Black populations, including in the St. Louis region, are colorectal cancer in African Americans under age 50 and multiple myeloma in African Americans of any age. While cholangiocarcinoma is rare, Washington University has expertise in this cancer and provides care for patients who come to St. Louis from across the country. For each of the three cancer types, the investigators are seeking 300 patient volunteers to participate in the research program. Patients will have their cancer genomes sequenced and compared to their healthy genomes to determine what led to their tumors’ formations. The genomic data could help inform how their cancers are treated.
“When we look at cancer genomic studies, most of the participants have been white male patients, so a lot of the treatment decisions we make are based on that data, and it may not be applicable to women and people of color,” said Fields, also chief of the Section of Surgical Oncology in the Department of Surgery and co-leader of the Solid Tumor Therapeutics Program at Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine. “We’re hoping this project can begin to address some of these disparities.”
Ding, director of computational biology for oncology, leads the genome sequencing portion of the project. Her team will work to provide conventional genomic sequencing of the cancers and also advanced single cell, protein and imaging analyses of the tumors, processes that are more typically part of research activities and not yet commonly integrated into patient care.
“We have known for a while that genome sequencing can have an impact on patient care, but what is unique here is that we will have the ability to do clinical sequencing for 900 patients in a systematic fashion,” Ding said. “With this funding, we will continue to enhance our clinical sequencing pipeline while improving care for hundreds of patients with these cancers. We are excited that we will use novel technologies in single cell omics, proteomics, and imaging for deeper investigations of these patients’ tumors, and develop a much better understanding of these diseases. We believe this will translate into novel insights for how best to treat individual patients.”
Drake, who is also associate director of community outreach and engagement at Siteman Cancer Center, is leading what is called the engagement optimization part of the project. Rather than simply educate patients about the study and ask them to participate, Drake’s team will seek to understand the patients’ concerns, values and the sort of information they would like to receive after having their tumors sequenced. In collaboration with the Program for the Elimination of Cancer Disparities (PECaD), researchers will work with a patient engagement advisory board, which includes survivors and patient advocates, to help guide the investigators in how they design the research studies and engage with potential participants.
“We hope to learn from the patients about what’s important to them in their decision-making,” Drake said. “We will conduct interviews with patients to understand their concerns and to find out what they’re interested in surrounding genomic testing and whether it’s something they would consider participating in.”
The researchers are using a web-based tool called the Genomics Adviser, tailored to the three cancers, to ask patients many questions about preferences and values. The tool walks patients through an overview of genomics research and the kind of information it can reveal. It also surveys patients about what types of genomic information they’re interested in receiving.
The researchers also plan to interview people who decline to participate. If investigators can understand why some people choose not to enroll in a study, perhaps future trials can be designed in ways that address some of those concerns.
“As we’re learning from those who decline, we can bring those concerns back to the whole team and try to implement strategies to improve on the design of these types of studies in the future,” Drake said.