Closing the Cancer Disparities Gap in the Age of Covid
Community Outreach & Engagement at DCI Comes of Age, Team Expands
In continuing efforts to expand Duke Cancer Institute’s community outreach and engagement matrix of research, programs, and strategic partnerships to reduce the cancer burden and close the cancer disparities gap in its catchment area, DCI senior leadership is excited to welcome a new leader to the COE team.
On Feb. 1 this year, cancer epidemiologist Tomi Akinyemiju, PhD, MS, was named DCI’s new associate director of Community Outreach and Engagement. (how to say her name)
“She's a rising star in the world of cancer epidemiology and cancer disparities,” said deputy director of DCI Steven Patierno, PhD, who provides senior oversight to DCI’s community outreach and engagement efforts and helped recruit her to Duke two years ago. “She’s still in the early stages of her career but is already funded with an R01 from the National Cancer Institute. She’s also doing extraordinary work on breast cancer disparities in women of African ancestry. It’s very exciting research at the intersection of social determinants of health and the biology of cancer.”
Akinyemiju joined Duke and DCI in Feb. 2019 as an associate research professor in the Department of Global Health and as an associate professor in the Department of Population Health Sciences where she also serves as vice-chair for Diversity, Equity, and Inclusion. She has a secondary appointment in the Department of Obstetrics & Gynecology.
“Duke is a very well-known brand, a well-known institution with really cutting-edge smart people doing outstanding research,” she said. “I was really excited to come here, to be in North Carolina and be in an environment that values innovation, excellence and collaboration.” Previously, Akinyemiju was Assistant Dean for Inclusive Excellence and an associate professor of epidemiology with the Markey Cancer Center at the University of Kentucky.
Akinyemiju’s current research to improve public health is focused on studying the social and biological mechanisms driving disparities in cancer risk, tumor aggressiveness and survival.
“Access to care is a very consistent theme in my work,” she said. “In Kentucky, there is the Appalachian region, with underserved and low-income white populations. Similarly, in North Carolina, we have pockets where there is a lack of access to care as well as low-income underserved minority populations.”
Akinyemiju is midway through a five-year $2 million NIH/National Cancer Institute-funded R01 study to assess the relative importance of race-specific barriers to healthcare access in Black and White ovarian cancer patients across nine states in the US, including Kentucky and North Carolina, and evaluating the impact of healthcare access on quality of cancer treatment, quality of life, and ovarian cancer survival. She expects that these new insights will help identify and prioritize ways to reduce disparities and improve care for these patients.
Akinyemiju was born in Michigan, but grew up in Nigeria. She came back to her birthplace in 2004 for her undergraduate, graduate, and post-graduate education, but her latest research project, also NIH/NCI-funded, brings her back to where she grew up.
Nigeria, which is seeing a rapid increase in breast cancer cases in addition to other non-communicable diseases, including obesity-related diabetes, has the highest breast cancer mortality rates on the African continent. Triple negative breast cancer, an aggressive, fast-growing hard-to-treat subtype with a poor prognosis, is the most prevalent breast cancer sub-type at nearly 45% of breast cancer cases.
Akinyemiju is exploring how rising rates of metabolic dysregulation brought on by changing lifestyle and dietary patterns may impact breast cancer risk in Nigeria. To do this she’s collecting biospecimens in women with and without the triple negative breast cancer subtype in order to study the biological mechanisms of different subtypes that could predispose one person over another to be at higher-risk. She also plans to extend this study to the U.S. to examine biological data in African American breast cancer cases where the triple negative breast cancer prevalence is 20%. One outcome could be the discovery of an epigenetic (heritable DNA changes) link to triple negative breast cancer in those of West African heritage, including Americans with enslaved ancestors of West African descent.
“In this study, we are interlinking genomic data with social determinants of health,” Akinyemiju explained. “We need more research to figure out what the risk factors and biological mechanisms are and what we can target to treat. We’re having to build this data from scratch, but once we build it, the implications for important scientific discoveries are endless.”
Building Out the Matrix
Akinyemiju joins a robust core team of community outreach and engagement (COE) leaders at DCI that includes Patierno; medical sociologist Nadine Barrett, PhD, MS, MA, founding director of the Office of Health Equity and current director of Equity, Community and Stakeholder Strategy at both DCI and the Duke Clinical & Translational Science Institute; and Angelo Moore, PhD, MSN, RN, who currently leads the DCI Office of Health Equity (OHE).
Duke Cancer Institute COE leaders and staff, together with DCI researchers and clinicians (particularly in the Department of Population Health Sciences), partner with municipal, county, state, and federal health agency associated groups and committees; community groups, churches, and local and national non-profit advocacy organizations (ex. American Cancer Society, Susan G. Komen, Leukemia and Lymphoma Society, V Foundation to Cure Cancer, and the Lung Cancer Initiative of North Carolina) to maximize DCI’s collective impact on reducing cancer incidence and mortality rates in the underserved communities of DCI’s catchment area.
Since 2012, shifting cancer data and the concerns of the communities DCI serves have informed the social, structural and biological disparities research conducted by DCI investigators and the community outreach initiatives and educational events developed and/or supported through DCI’s Office of Health Equity (OHE).
Duke Cancer Institute has dedicated most of its community outreach and engagement energies, to the medically underserved Black communities in the state (Black people make up at least one-quarter of the population of DCI’s catchment area), LatinX and Asian American communities (both growing in number), and rural populations (economically depressed communities that cross racial and ethnic lines). There are plans to step up engagement efforts with Native American and LGBQT+ groups.
Cancer is now the leading cause of death in North Carolina, according to the NC Comprehensive Cancer Control Plan (2020 to 2025)a comprehensive mapping and analysis of the state’s county-by-county cancer landscape. There are major health disparities in incidence and mortality across the state and county-by-county depending on racial or ethnic background, in lung cancer, female breast cancer, colorectal cancer, prostate cancer, and stomach cancer. These cancers as well as cervical and skin cancers have been targeted for stepped up screening and prevention and in the case of cervical cancer, HPV vaccination.
Over the past nine years, the Office of Health Equity, first under the leadership of Barrett and now under the direction of Moore, have worked with their community partners to reduce the cancer burden in the medically underserved communities of DCI’s catchment area, through free-of-charge prevention and screening programs, educational webinars, and other outreach/awareness raising events. The Men’s Health Screening program, Women’s Health Awareness Day, Durham Initiative for Stomach Health, the AME Zion HEAL partnership (through the Duke CTSI) and the recently launched monthly "Conversations with Our Community" webinar series are among OHE’s signature initiatives.
Big investments have been made toward achieving DCI’s community outreach, engagement and research goals and continue to yield dividends.
- INNOVATION Under Barrett's leadership, an extensive three-year (2013-2016) community health needs assessment campaign, “Community Voices on Cancer," which continued in 2017 through Project PLACE (Population Level Approaches to Cancer Elimination) — a community-based population health assessment reaching 2,315 racial and ethnically diverse respondents by engaging 20 community partners within DCI's network —resulted in the development of a five-step blueprint for proactively engaging underserved communities and improving the quality and scope of patient care. This earned DCI an Innovator Award from the American Association of Community Cancer Centers (watch video at right) for the Office of Health Equity’s “engaged and diverse Community Advisory Council; robust and collaborative health assessments; programs, services, and research priorities; aligned partnership programming; and programmatic evaluations and outcome measures.”
- REPRESENTATION Duke Cancer Institute leaders and investigators began serving with the State of North Carolina Advisory Committee on Cancer Coordination and Control (NC-ACCCC) and the NC Cancer Registry. They contributed to data and recommendations to the NC Comprehensive Cancer Control Plan (2014-2020) and the subsequent report (2020-2025). Patierno was named a governor-appointed advisor in 2013 to the State of North Carolina Advisory Committee on Cancer Coordination and Control (NC-ACCCC) and in 2018 was named to a second five-year term. He’s now been elected chair of the group. COE leaders and staff serve on several NC-ACCCC subcommittees, including Prevention, Screening, Early Detection, Care & Treatment, and Health Policy, as well as in other local and state committees focusing on access to care. Participation in these local and state-level committees has allowed DCI to impact the entire cancer continuum, disseminate best practices locally and throughout the state and influence policy.
- INCLUSION In 2015, the Office of Health Equity launched "Just ASK: Increasing Diversity in Biomedical Research," a curriculum developed by Barrett to equip DCI clinical research unit (CRU) team members with the necessary skills to engage a more diverse pool of patients in clinical research. Expanded and tested in 2019, 120 CRU members, over the period of a year, went through the training program. The program is now institutionalized as part of Duke’s Engagement, Recruitment and Retention Certification Program for all clinical research units and Barrett hopes to expand the program nationally.
- PARTNERSHIP The NCCU-Duke Cancer Disparities Translational Research Partnership (2016-2020), funded by a $2 million NCI grant, brought cancer researchers from DCI and North Carolina Central University together to pursue translational cancer disparities research, including characterizing the genetic differences of aggressive prostate cancer in African American men and understanding the mechanisms of inflammatory breast cancer, a highly malignant breast cancer subtype occurring predominantly in African American women. A related career development initiative leveraged resources at NCCU and Duke to recruit and train underrepresented minorities (graduate students, postdoctoral fellows and early-stage investigators) in translational cancer disparities research, clinical research operations, professional development and community engagement.
OUTREACH The Office of Health Equity, under Moore’s direction, launched a new Community Health Ambassadors program in July 2020 to amplify OHE’s education and navigation efforts toward mitigating disparities. More than 40 trusted members of faith and community-based organizations, from 20 different counties, have so far been trained by OHE to develop and host cancer education programs where they live. These Community Health Ambassadors have already provided cancer education to more than 1000 members of their communities, resulting in numerous referrals for cancer screening and treatment.
- RESEARCH In Sept. 2020, a three-year $3.5 million NCI Exploratory (P20) SPORE grant was awarded to DCI, with Patierno as PI, to support research toward mitigating cancer health disparities between Black people and White people — both the possible biological underpinnings and the social and structural reasons for these gaps — specifically in lung cancer and in stomach cancer. This built on earlier pilot work in stomach cancer research and outreach led by epidemiologist Meira Epplein, PhD, and years of basic science research in the Patierno/George/Freedman Lab for Cancer Research.
DCI’s continuing commitment to reduce the cancer burden in its catchment area is not only good practice, it’s a critical requirement of the National Cancer Institute Cancer Center Support Grant, a grant that’s been continuously awarded to DCI, as a National Cancer Institute-designated comprehensive cancer center, every five years for nearly 50 years.
All National Cancer Institute-designated comprehensive cancer centers must — as a condition of the Cancer Center Support Grant that funds them — work to reduce the cancer burden (incidence rate and mortality rate) and cancer risk factors in the communities they serve.
Toward this end, centers are expected to conduct research of particular relevance to their catchment area and to engage the populations within their catchment area (particularly historically marginalized and underrepresented populations) in the research that they conduct. This requires a long-term commitment to community outreach and engagement — and a strong infrastructure to support that commitment.
Akinyemiju’s leadership role as associate director of Community Outreach and Engagement at DCI is directly tied to that grant.
She will bring her extensive experience as a cancer epidemiologist to bear on DCI’s mandate to reduce the cancer burden in its catchment area; leverage existing and future data to drive DCI’s community-engaged research agenda forward.
“I’m an epidemiologist. This is what I do — analysis and research to draw inferences and then make recommendations for prevention strategies that are data driven and evidence based,” she said. “We’ll be taking information gathered from our community partners, our institutional partners, and our own analysis to monitor trends and identify gaps. We’re all going to come together so that we can reduce the burden of cancer inside our catchment area — collaborating with the Office of Health Equity on the outreach side, collaborating on the DCI training side, focusing on increasing diversity in our scientific research, and also making sure that the work we do at DCI is relevant for the needs of all our patient population. The goal is really to bring all of that together to drive systemic change and cancer health equity. Together, is where we’ll really see transformative change. That’s my vision.”
As associate director of Community Outreach and Engagement, Akinyemiju, working closely with Moore, will serve as DCI’s principal coordinating liaison with all medically underserved communities within DCI’s catchment area, with a plan, she said, to make sure that existing partnerships with the community are “plugged into the infrastructure, institutionalized — so that these relationships aren’t just between one person and one person.”
Moore, a decorated U.S. Army Nurse Corps veteran who joined DCI in May 2019 to lead the “boots on the ground” operations of the Office of Health Equity, is looking forward to Akinyemiju being able to help bridge and align the various DCI COE efforts.
Moore’s core staff includes two community-engaged patient navigators/health educators (Nadia Aguilera-Funez, BA, and Aleyah Brown, MPH), a dedicated data and evaluation specialist (Kearston Ingraham, MPH), a senior program coordinator (LaSonia Barnett, MA) and a staff assistant (Aretha Rice). OHE has, in Aguilera-Funez, a bilingual (English/Spanish) community-engaged patient navigator/educator who assists in outreach, engagement, and navigation in the area’s Spanish-speaking populations. In addition, bilingual health providers help facilitate selected OHE public webinars and targeted listening sessions in Spanish, Mandarin Chinese and Korean.
“Because we’re the community facing (part) of DCI, we want to bring the cancer concerns of the community to DCI — to help inform which research programs we need to develop and, bi-directionally, to share with the community the cancer research that’s going on at DCI,” said Moore.
In addition to Moore, Akinyemiju will meet regularly with all of the other associate directors at DCI, including, of basic research (Christopher Counter, PhD) and of translational research (Donald McDonnell, PhD) as well as the associate directors of DCI’s 11 clinical disease groups and the leaders of DCI’s seven NCI-designated research programs.
“She’ll be systematically meeting with each of these leaders to make sure that their research and clinical practice is informed by issues of concern identified by our community and that what they’re doing is being translated back to the community in continuance of DCI’s mission to increase cultural sensitivity and competence across the entire DCI,” said Patierno.
When the Duke Comprehensive Cancer Center became Duke Cancer Institute in 2011, the goal of being a true integrating umbrella for cancer clinical care, research, education, and outreach, across the Duke University School of Medicine and Duke Health was realized.
The leadership team of that new DCI — executive director Michael B. Kastan, MD, PhD, and deputy director Patierno — began with a bold vision for how to consolidate, accelerate and expand DCI’s outreach and community-facing engagement efforts toward reducing cancer disparities and improving population health. Together they'd launched, with Barrett — already an experienced community health and health equity investigator at the time who'd been serving as director of Community Programs for the global headquarters and the NC affiliate of the Susan G. Komen foundation — DCI’s first dedicated Office of Health Equity and Disparities (now called the Office of Health Equity).
“DCI came from humble beginnings in our community outreach and engagement efforts, initially with Valarie Worthy, who’s now a DCI treatment and survivorship patient navigator, doing most of our community outreach. In 2012, we expanded to myself and Dr. Barrett, and then expanded further, in 2019, with the addition of Dr. Moore, all the while adding staff to OHE. And now we’ve added Dr. Akinyemiju to the team,” said Patierno. “We haven’t replaced anyone, and no one has left. Rather, we’ve been expanding our vision, expanding our talent pool, and expanding our impact. Our vision to achieve health equity by mitigating and eventually eliminating cancer disparities has expanded to meet the continuing challenges. COVID has torn off the veil. The world is suddenly aware of the magnitude and the depth and breadth of health disparities. And the work we've been doing quietly all of these years — some of us for 25 years — is now at the forefront.”
"I am excited to see the COE team growing," said Barrett. "Advancing cancer health equity takes a multi-pronged approach with diverse expertise and strong authentic community/stakeholder engagement. Leading this work over the past eight years has resulted in the growth of our community networks, increasing access to care in our community, enhancement of our community-based research portfolio and the development of nationally recognized models of engagement. As the team grows, we have a solid foundation to expand upon toward our next level of innovation advancing health equity."
"Colorectal Cancer: Early Detection Saves Lives" (3.22.21--updated with event recording on 4.19.21)
*Emily Butler Bell, MPH, Director, National Colorectal Cancer Roundtable (NCCRT) – Colorectal Cancer Interventions
*Julius M. Wilder MD, PhD, Assistant Professor of Medicine, Duke Division of Gastroenterology and Duke Clinical Research Institute
*LaSonia Barnett, MA, Sr. Program Coordinator, Duke Cancer Institute, Office of Health Equity
WATCH: "How Studying Genes Can Lead to More Personalized Cancer Care" (2.23.21)
*This event was hosted by OHE and featured Jennifer Freedman, PhD, Tyler Allen, PhD, and Sean Piwarski, PhD, of the Patierno/George/Freedman Lab for Cancer Research
WATCH: “Cervical Cancer: Early Detection Saves Lives" (1.24.21)
*This event was co-hosted by DCI OHE and Nuestras Voces Network. Speakers included Angeles Alvarez Secord, MD, MHSc; Rafael Gonzalez, MD; Nadia Aguilera-Funez, BA, and Teri L. Larkins, PhD, CDC Division of Cancer Prevention and Control.
Cancer Disparities Lecture Series
3.10.21 at 12 p.m. via Zoom
"Role of African Ancestry in Biological Determinants of Risk and Survival in Breast Cancer"
*Melissa B. Davis, PhD, Weil Cornell Medicine
This event has already concluded. To inquire about a recording, email Trena Martelon
4.21.21 at 8 a.m. via Webex
5.4.21 at 1 p.m. via Zoom
"Multi-Level Studies to Address Cancer Health Disparities: From Neighborhoods to Omics"
* Scarlett Lin Gomez, PhD, MPH, Professor, Department of Epidemiology and Biostatistics, University of California, San Francisco, Helen Diller Family Comprehensive Cancer Center
To Register, email Aretha Rice
NC Oncology Navigators Association
3.26.21 9 a.m. to 2:45 p.m.
*Steven Patierno, PhD (Deputy Director of Duke Cancer Institute)
*Angelo D. Moore, PhD, RN, NE-BC (leader of DCI Office of Health Equity)
*LaSonia Barnett, MA (program coordinator, DCI Office of Health Equity)
*Tracy Battaglia, MD, MPH
*Hala Borno, MD
Co-chaired by DCI deputy director Steven Patierno, PhD, this 501C3 works in close partnership with NC-ACCCC to coordinate a network of more than 300 patient navigators across North Carolina