Members of the Lineberger Equity Council leadership team.
Left to right: Wendy Brewster, MD, PhD, Stephanie Wheeler, PhD, Samuel Cykert, MD, Bernard Weissman, PhD, and Lauren Matthews, MPH.
The past year has brought its share of challenges and successes, and nowhere is this more evident than in diversity, equity and inclusion work. UNC Lineberger Comprehensive Cancer Center is leading the way in diversity, equity and inclusion (DEI) efforts, not just with the creation of the Lineberger Equity Council, but directing these efforts out of the idea phase and into the cancer center’s environment, research units, laboratories and clinical spaces to make a difference for UNC Lineberger team, patients and their families.
After the murder of George Floyd in Minneapolis, members of UNC Lineberger’s senior leadership team met with faculty and staff to hear their perspectives on diversity, inclusion and equity in cancer care, research and outcomes. UNC Lineberger’s leadership participated in trainings with the Racial Equity Institute, met with diversity leaders from the Schools of Medicine, Public Health, Nursing and Pharmacy and facilitated discussions of important literature in these areas. The Lineberger Equity Council has learned from the 360-degree environmental assessment and is ready to implement these informed perspectives, training and plans into action with the intent to measure progress during the next several years.
“It’s been over a year now since George Floyd died and many organizations have put out strategic plans, but how many have set up measurables, goals and targets? That’s where we’re headed, and it is so important,” said UNC Lineberger’s Samuel Cykert, MD, co-leader of the Equity Council.
“The first phase was the goal of listening,” said Wendy Brewster, MD, PhD, co-leader of the Equity Council. “We obtained a thorough assessment of the scope of the challenges and ways to make meaningful change. We aren’t just trying to fix one personal issue at a time, it’s important we change our system and the way we do things to ensure accountability. Structural problems can’t be fixed without measurable outcomes. We don’t want patches; we want and need to see enduring changes.”
Racial disparities in cancer
Cancer disproportionately affects people of color, especially African-Americans. Because of poorer cancer detection, worse access to care, incomplete treatment, and experiencing many of the negative social determinants of health, patients of color suffer higher mortality rates from almost every cancer type and stage. Cykert said looking at DEI, the concepts break down into two parts — diversity and inclusion, which encompasses care givers, communication, and support staff and how they are treated in work the work environment and actually providing the care and equity, which is heavily focused on research, patient care the associated outcomes.
“We know on a national and local basis there are and have been documented health disparities for decades — social determinants, access to care, insurance issues, institutional biases, implicit biases. This is not intentional racism, but the effect is the same. People don’t get completed care,” Cykert said.
Cykert’s research into real time data from patients undergoing lung and breast cancer treatment found a 10 percent gap between Black and white patients in completing their cancer care. The researchers built a warning system that would alert physicians and care teams when a patient was missing appointments or not meeting care milestones. Cykert found that recognition of care deficits in real time and communication was the key to narrowing the gap. Navigators trained in barriers particular to patients of color were responsible for addressing digital warnings through improving patient communication, ensuring the clinical team was aware of missed milestones and assuring that any patient barriers or clinical delays could be overcome.
“With this intervention using digital systems and human responsibility, treatment completion for white and Black patients went up, and the racial gap went away. Everyone benefited,” Cykert said.
Brewster agreed that this work helps all cancer patients, and another important goal is to improve participation in clinical trials by people of color, something she feels can be achieved by communicating more effectively with patients, their advocates, caregivers and supporters.
“We have an opportunity to learn what the challenges are for enrolling onto clinical trials and to increase representation in clinical trials,” she said. “We have an opportunity to examine and improve upon the experience of enrolling onto a trial. We must remove the hurdles that limit who can be on the trial.”
Building a more representative team
Brewster and Cykert are also looking at recruitment and retention of care teams to help advance the Equity Council’s mission.
“Only two percent of cancer clinicians are Black, and we know from research that if we’re not representing the communities we serve, communication often breaks down and things don’t go as well,” Cykert said. “We need to be mindful to train a more diverse population of researchers, clinicians, and administrators and recruit them and keep them. We need to make the environment such that everyone loves working here.”
Improving the patient experience through provider training and education is something both Brewster and Cykert feel private philanthropy can impact. From the moment a student sets out on a career path in the medical field, they are faced with financial hurdles that can impact their success.
“The idea of educational opportunities for early college kids of color is one area,” Cykert said. “Even people who are applying to med school, there are fees for travel, fees to do interviews. We need to create opportunities for people who are interested in science to even apply.”
“UNC has an undergrad campus with a lot of diversity,” Brewster said. “Let’s give them opportunities to have educational experiences in our labs. When internships aren’t paid, it biases who has the opportunity to have exposure to research. That in turn impacts a resume or application to graduate and professional schools. Individuals with fewer resources are unable to take advantage of the unfunded research opportunities. Private funds will help us build a research pipeline.”
The digital direction of health care is also an area where Brewster and Cykert believe outside funding can make a difference.
“Electronic health records were generally built around capturing finances and recording the progress of care. It takes lots of innovation and effort to build real time warning systems that can identify opportunities to absolutely optimize research and care. Philanthropy can support the building of such an innovative and inclusive virtual environment,” Cykert said.
Brewster said that digital space could include having televisions in the hospital’s clinical areas, providing education about the benefits of clinical trials or using artificial intelligence (AI) to assess a patient’s experience and detail the important quality aspects of care.
Changing culture through sustainable change
Brewster said there won’t be sustainable change unless culture discussions continue, and the council will continue to ask questions about how to change our culture so that this is an environment where we all thrive and are able to succeed. “Education is the key to change. We believe that most want this to be a place where we can serve at our potential. Conversations and discussions may be awkward at first, I know that many are concerned about how to express themselves without offending colleagues,” she said. “We know that at Lineberger, health care providers, research teams, administrative professionals and staff are committed to a culture that improves the outcomes of our patients and research.”
Cykert said those cultural changes are already taking place throughout UNC Lineberger, and the council is focused on six prime areas — culture, patient and clinical care, infusing equity and inclusion into research, accruals in clinical trials, retention pipeline and hiring. Researchers are already working to organize digital data to improve care for patients and reduce disparities. Marjory Charlot, MD, MPH, MSc, is working to better engage Black patients, who are historically under-represented, to help understand cancer clinical trials and ultimately enroll.
“We have a pretty full blueprint for moving forward,” Cykert said. “We have the map. Now we need to drive the car. It’s like working in a metal foundry; the next step will be going to the foundry and building that car.”
“This work is ongoing, it will take some time,” Brewster said. “We’re on the right path, taking the next step.”