This is the first ACCCBuzz post reporting on the 2023 National Minority Quality Forum Summit on Health Disparities and Spring Health Braintrust: “Reimagining Our Healthcare to Protect the Most Vulnerable.” This event was held from April 17 to 18 in D.C.
The mission statement of the National Minority Quality Forum (NMQF) is centered around one goal: reducing patient risk by assuring optimal healthcare for all. The 2023 NMQF summit was a vehicle for achieving this goal. The summit began with concurrent sessions—the first of which offered several perspectives on improving diversity and inclusion in cancer clinical trials.
“I have been very lucky to have been a part of [clinical] trials that sometimes work, and there is nothing like seeing tumors melt on a scan and wanting every patient to have first right of refusal to that trial,” Meghan McKenzie, MS, patient inclusion and health equity, Chief Diversity Office at Genentech, said at the opening of the session. “We know patients are not being asked—in particular—in Black and Brown communities.”
A two-time survivor of melanoma, McKenzie understands the lifesaving benefits of clinical trials, as well as the barriers to accessing these studies that exist. “The bio sample repositories, the cells that our researchers are working on in the lab to find new discoveries, new targets, and new medicine, 90 percent are from patients of European ancestry,” McKenzie said. “Those cells, blood samples, urine, and tumor tissues need to be heterogenous. We need all ancestries.”
McKenzie’s sentiment on the barriers that prevent many patients from accessing clinical trials were echoed by the session’s other panelists. “We know that clinical trials have not changed materially in decades, but we know that we can do better,” said Kendal Whitlock, MPH, head of digital optimization/RWE clinical trials at Walgreens Boots Alliance. “By meeting people where they are, we can conduct patient recruitment differently than we have in the past. We don’t have to limit ourselves to just email blasts in countless numbers and have a one percent recruitment [rate].”
According to Whitlock, the role of recruitment in clinical trials cannot be understated. “A study by CISCRP [The Center for Information and Study on Clinical Research Participation] found that 96 percent of patients would participate in a clinical trial if they heard about it—even through their retail pharmacy,” she said. “People are refilling a prescription more frequently than they are seeing a doctor.” As a result, Whitlock shared that Walgreens is committed to increasing awareness of clinical trials through more than 9,000 of its stores within the United States. “Seventy-eight percent of Americans are within five miles of a Walgreens store,” she said. “Inspired by our CEO [chief executive office] and chief trial officer, we have made a commitment to do something differently than what we have seen in the pharma[ceutical] industry in the past.” Further, Genentech made a similar pledge, committing to spend up to $1 billion on diversity initiatives by 2025, said McKenzie.
Leo Russo, PhD, vice president of global medical epidemiology, Worldwide Medical and Safety, at Pfizer believes these pledges are emblematic of the responsibility companies bear in efforts to improve diversity in clinical trials. “We are doing studies, now, where we look for drivers and causes [of disparities], geared toward action,” Dr. Russo said. “Set those goals and set them objectively, so there is no question about them.” Further, panelists agreed that establishing trust with marginalized communities is instrumental to achieving these goals.
According to Dr. Russo, building and earning trust among diverse populations is essential to achieve diversity in clinical trials. “We have medicines that work and treat diseases, but some people are not getting it; there is a barrier,” he said. “Once the medicine is on the market, if there is no trust in how it was tested and developed and if you don’t see people like you represented in the trial, you don’t want to take it.” According to Whitlock, it is important to remember that building trust does not look the same each time, different communities have different needs. Thus, Whitlock believes that companies must work on building community partnerships—a belief further echoed by panelist Courtney Christian, MPA, deputy vice president of policy and research at the Pharmaceutical Research and Manufacturers of America (PhRMA).
“When we [PhRMA] first started thinking about what our equity initiative would look like, we did several focus groups. We talked to different races, ethnicities, and folks of different sexual orientations,” Christian said. “We asked them what they wanted to see from the pharmaceutical industry in terms of clinical trial diversity, and one gentleman asked, ‘Are you coming to help or are you coming to harm?’” According to Christian, the feedback gathered from these focus groups prompted PhRMA to update their clinical trial diversity principle. “We are coming to you [the community] to ask you for the solution,” she said. “We want to make a medicine that has efficacy for you, your family, and [your] community.”
To conclude the session, Christian shared a quote that she attributes to a mentor of hers: “Health is a crown worn by those who are well and seen only by the sick.” The same can arguably be said about privilege. Thus, healthcare organizations and companies must work toward employing a diverse workforce—one representative of the patient population they aim to treat or aid—to effectively promote diversity and inclusion in cancer clinical trials. “Diversity of staff in our workforce means diversity in enrollment; this is research evident,” McKenzie said. “We want to bring diversity everywhere we go, even [with] holding our vendors [or sponsors] accountable.”
Through his 2023-2024 ACCC President’s theme—(Re)Building the Oncology Workforce to Deliver Next Generation Cancer Care—Dr. Olalekan Ajayi, MBA, seeks to do just that. In discussing his theme, Dr. Ajayi said:
“Whether we are talking about race, geography, age, socio-economic status, or any other individual characteristics, what is better than having providers who reflect the communities where they live and work, providers with cultural humility and the desire to understand what their patients value, and providers who can walk a mile in their patient's shoes? Those are the providers we need to rebuild our oncology workforce; those are the providers who will succeed in delivering next generation care.”
This blog highlights the need to enhance inclusion and diversity in cancer clinical trials—an awareness to which May is dedicated. For National Cancer Research Month, please keep a look out for further content from ACCCBuzz that highlights the importance of cancer research that is representative of the diverse oncology patient population at large to ultimately improve health outcomes for all. Below are further readings and resources from ACCC:
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