In the 1950s, Kimberly Johnson’s maternal grandmother was diagnosed with metastatic cervical cancer and ultimately lost her life to the disease. Since then, her family has always wondered whether the situation might have had a different outcome if her grandmother had had access to today’s health care.
“We talk about how things are different now, and if she’d lived today she might have lived longer and better, especially if she had good insurance and a good income,” says Johnson, MD, MHS, associate professor of medicine.
But she knows that advances in cancer care since then still might not have saved her grandmother. She was African American, and the evidence is overwhelming that even now, after years of medical progress and economic improvement, racial and ethnic minorities tend to receive inferior health care. In fact, according to 2016 U.S. Department of Health and Human Services Office of Minority Health data, racial and ethnic health disparities result in nearly 1 million preventable deaths per decade, accounting for $50.3 billion in direct medical expenses.
It’s this lack of health care equity—the clear presence of controllable and avoidable disparities—that pushed Johnson and a multi-disciplinary research team to create the Duke Center for REsearch to AdvanCe Healthcare Equity (REACH Equity) and apply for grant funding. Together, the team and community stakeholders launched the initiative to test and develop patient-centered care improvement interventions.
The ultimate goal, she says, is providing the best possible care during clinical encounters.
“Racial and ethnic disparities are pervasive,” says Johnson, nationally known for her research on racial disparities in palliative care for older African Americans. “They exist even among white and minority populations with similar access to care, and their elimination is paramount given the consequences to patients, families, and health systems.”
A New Approach
Research into health care disparities and health equity isn’t new, but the concept behind REACH is unique. Instead of specifically honing in on improving patient behaviors and knowledge, like most work in this area, REACH focuses on how health care providers might inadvertently contribute to inequitable care delivery that may result in poorer health outcomes for minority patients—and what can be done to change it.
“REACH is special in how it develops and tests interventions that concentrate on improving the quality of patient-centered care in the clinical encounter,” Johnson says.
“It’s also really about helping doctors and health systems acknowledge and realize we have a real role to play in reducing a widespread problem.”
-Kimberly Johnson, MD, MHS, Associate Professor of Medicine
Most doctors are well intentioned, she says, and are unaware they might be doing anything to contribute to this problem. Presenting them with research that highlights flaws in the system and suggests actionable solutions could improve health equity overall, greatly improving population health.
The program has already drawn significant support. Not only has REACH garnered interest from dozens of physicians, researchers, and community members, but it’s also received substantial financial backing. In 2017, Johnson received funding as one of 12 National Institutes of Health Centers of Excellence. The grant, totaling approximately $6.8 million over five years, comes from the National Institute on Minority Health & Health Disparities. Duke University School of Medicine and School of Nursing have also pledged funding.
“This new center at Duke has tremendous potential for impact at Duke. It will create a collaborative environment in which Dr. Johnson and a team of very talented investigators can continue their formative work to improve the health of minority populations in our own community and globally,” said Mary E. Klotman, MD, Dean, Duke University School of Medicine.
Seeking Solutions
Disparities exist with almost every disease or condition, Johnson says, and REACH endeavors to ameliorate them.
The program is in its early stages, and all plans are nascent, Johnson says, but funds are being divided among research, training and education, and community-engagement efforts. Three large projects are underway to reduce implicit bias, improve communication, and augment the delivery of need-based care to patients and families.
With research, Johnson says, REACH aims to create an umbrella for multidisciplinary health disparities investigators. An annual colloquium is planned, beginning in spring of 2019, and a seminar series is scheduled for this year, giving investigators a forum to present their work and develop collaborations.
According to pancreatic cancer researcher Antonio Baines, PhD, associate professor of biological and biomedical sciences at North Carolina Central University, involving students—undergraduate through doctoral—is the best way to maximize research efforts. As a REACH collaborator and Stakeholder Advisory Board member, he hopes to create research opportunities for students.
“My hope is REACH could open the door for summer internships in doing health disparities research,” he says. “It could be clinical, at the bench, or public health research. Not only would this usher in more collaboration between institutions, but it would also increase students’ understanding of health disparities.”
Training opportunities also exist for junior faculty investigators, Johnson says. Four junior investigators received REACH Equity Career Development Awards to continue their health disparities work, and plans exist to fund others. Each investigator receives $75,000 annually for two years.
Sarah Wheeler, MD, assistant professor of obstetrics and gynecology at Duke University School of Medicine, is one of the first recipients. She’s using the funding to investigate strategies to improve clinical experiences and increase adherence to preterm birth prevention therapies among African American women. She hopes to develop an intervention to make it easier for women to follow a regimen for 17P, a weekly injectable progesterone treatment that helps prevent pre-term birth.
Wheeler says addressing this problem in the African American community is vital to improving the community’s overall health.
“Black women have 49 percent more pre-term births than other racial or ethnic groups,” says Wheeler, who was a premature infant herself. “I want to determine the most culturally sensitive way to administer this therapy so women will experience the most benefit of prematurity prevention.”
Wheeler says she plans to create an intervention to improve clinical encounters for women with a history of prematurity who are also eligible for 17P. She hopes improvements in the clinical encounter, such as work-friendly appointment availability times, will improve women’s ability to stick with the weekly injection.
“Pre-term birth leads to billions of dollars of health care costs, and it has a rippling effect, including lost work productivity, lower long-term infant and child health, and profound implications for families and communities,” she says. “We have a huge need to address the disparities and reduce the impact.”
REACH will also offer Health Disparities Research Vouchers for investigators who want to launch new projects or add additional aims to existing ones. The program will establish Transdisciplinary Think Tanks to provide researchers with seed money to develop collaborations that can progress to larger endeavors. REACH also will award grants to residents, fellows, and post-doctoral students who identify mentors to work with on health disparities projects.
Engaging the Community
The real key to REACH’s success, however, is community involvement. Greater input from patients will give providers the guidance they need to change their behavior and improve the patient’s clinical experience and ultimate outcome. Through its Community Engagement and Dissemination Core (CEDC), REACH is gleaning input from community members and organizations, as well as Lincoln Community Health Center and Duke Regional Hospital leadership.
According to Nadine Barrett, PhD, assistant professor in community and family medicine and a CEDC faculty leader, the Stakeholder Advisory Board meets monthly and is integrated in all aspects of REACH Equity. The board members represent a variety of perspectives, including those of patients, caregivers, researchers, clinicians, and community leaders. Collectively, they share their perspectives to inform REACH activities: they provide input on research projects, serve as reviewers in the grant reviewing process, and provide recommendations and participate in dissemination activities. The goal, Barrett says, is to incorporate the perspectives of stakeholders, including the broader community, in all decision-making and activities aimed at improving the health care experience. Bryan Batch, MD, and Schenita Randolph, PhD, work together with Barrett to build stakeholder engagement and the dissemination of the center’s work to a broader audience.
Together they worked with Johnson to ensure the REACH Equity leadership, staff, researchers, and stakeholder advisory boards went through a race equity training program to reinforce a shared understanding of how systemic racism functions and shapes the lived experience of people of color and particularly African Americans.
“Oftentimes, we look at the fish, and if it comes up sick, we want to find out what’s wrong with it; we look at the group and community to see what’s wrong with them, and we want to fix them,” says Barrett. “But if more fish come up sick, maybe it’s not the fish. Maybe it’s the water. Maybe it’s the society and the systems, including health systems, in which our patients live and interact that make them sick. We need to investigate those factors as we develop solutions. In order to reach equity, we must have a broad and deep understanding of the environment we live and function in, the assumptions and decisions that are made that shape our experiences differently based on race, and why these disparities exist. For REACH Equity, we are focusing on the clinical encounters, and the Stakeholder Advisory Board is critical to shaping our process and progress. ”
So engaging the community in REACH Equity helps ensure that the work actually addresses a community need, Johnson says.
This is where community partners, such as Cynthia Kornegay, come in. Kornegay doesn’t have a medical background; she’s a major in the Detention Services Division in the Durham County Sheriff’s Office. She’s deeply integrated into the community and has a direct line to what’s most important and effective for the population.
Her input is critical to helping REACH investigators realize their goals.
“I give them my perspective on how patients in the African American community can sometimes be very distrusting of the medical field,” she says.
“Sometimes, we understand when we walk into the room, we’re not viewed as just a patient, but specifically as an African American patient.”
-Cynthia Kornegay
Many problems, she says, could be solved by teaching providers how to communicate better with patients. Ensuring doctors can ask and answer questions without making patients feel talked down to could go a long way toward improving patient compliance and satisfaction.
Having community members involved also helps REACH break down barriers between local groups and the health care community, Kornegay says. Including laypeople without medical training shows patients that project leaders are truly vested in developing strategies and interventions to improve the provider-patient interaction and bolster health outcomes.
“I’ve never seen anyone approach health disparities from where REACH is going with it,” Kornegay says. “We hear about studies where they’re trying to teach patients to engage more with the doctor and tell patients what questions they should ask. But, through REACH, they’re trying to show doctors and health care providers they have certain biases they might not even understand.”
Making a Difference
Ultimately, Johnson says, REACH aims to give providers tangible guidance on how to best optimize the health experience for all patients, especially minority patients.
“At any time, any patient may perceive they’ve been treated poorly by any provider, but there’s evidence it occurs more often with racial and ethnic minorities,” she says. “They report lower-quality communication, poorer doctor-patient relationships, less respect, less trust, and increased discrimination in the clinical encounter, and it’s all associated with poorer health outcomes. REACH’s focus on improving patient-centered care attempts to address these issues.”