by Michele Lynn
When Tony Burns was diagnosed with cancer in April 2016, he thought he had been handed a death sentence. “But here I am, one year post-treatment, in remission, getting on with a new normal,” says the lifelong District resident.
Tony now uses his experience with cancer as a patient advocate, volunteering with the Institute for Patient-Centered Initiatives and Health Equity, which is part of the GW Cancer Center. The institute conducts research with underserved communities that have been historically discriminated against in clinical care settings, scientific research, and society at large.
The institute seeks to understand the experiences of those historically underserved in order to prioritize research questions that are responsive to addressing cancer patient needs. The institute then creates training materials, in-person courses and seminars, and other tools to help clinicians, public health professionals, and medical administrators improve communication with underserved patients, enhance patient engagement, reduce health care inequities, and improve patient outcomes.
“There is a clear and compelling need to eliminate bias in health care toward racial, ethnic, and sexual minorities here in our nation’s capital,” says Mandi Pratt-Chapman, associate center director for Patient-Centered Initiatives and Health. “Minorities make up the majority of our city’s residents, and often face more aggressive cancers, and sustain worse health outcomes.”
One of the ways that the institute is addressing cancer inequities is through its community advisory board (CAB) on which Tony sits. “The community advisory board gives a voice to patients,” he says. “It lets board members be a bridge between the community and doctors.” As part of its efforts, the board is conducting a series of listening sessions in D.C.’s lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities in order advance research based on patient and community priorities.
“This is an innovative approach, as most of the past research has been created in isolation in an academic setting,” says Mandi. “We are trying to turn research on its head and address the priorities of the communities we serve.” Only a small percentage of research subjects are people of color or who identify to researchers as part of the LGBTQ community, she adds. “If published research is only representative of white, straight, higher-income people, the guidelines and clinical pathways that are published may not be well-suited to the realities of minorities coming in the door,” she says.
The institute is part of a new vision for the GW Cancer Center led by director Eduardo M. Sotomayor, M.D. “Nearly half of Washington, D.C., is black or African-American, about 16 percent of the broader region is Hispanic, and approximately 10 percent of D.C. residents are from the LGBTQ community,” he says. “Mandi and her team are identifying groups that have not been properly included in cancer prevention, control, screening, diagnosis, and treatment efforts in the past—and bringing to the table populations that have been ignored for too many years.”
Community Training and Engagement Alayna Waldrum, a cancer survivor who serves on the CAB alongside Tony, says the board is empowering the community: “I’m African-American, I’m a woman, and I’m a lesbian—all of which are populations with greater risk for cancer and that tend to have worse health outcomes after diagnosis and treatment,” she says. “The community advisory board is an important piece of the puzzle because we are working on broad community education and activism in cancer care and treatment, not just in D.C. but at a national level.”
Thanks to a $1.2 million gift from The Pfizer Foundation* in 2009, the institute created a training center focused on patient- centered care and became a go-to training source for clinicians interested in patient navigation and cancer survivorship education throughout the country.
As an outgrowth of that successful project, last year The Pfizer Foundation granted $1 million to the GW Cancer Center for a new program called TEAM Training for Patients and Providers: Advancing Equitable, Patient-Centered Cancer Care. This program aims to improve patient-provider communication, reduce health care bias, and foster strong patient-provider relationships.
Patient-provider communication, explicit and implicit bias, and patient-provider relationships influence if and to what extent patients can share in decision-making about cancer treatment options based on their values, preferences, and real-life needs.
“We are moving from training for knowledge to training for action to foster systems changes in 25 institutions nationally,” says Mandi. “Teams from each cancer center will create action plans focused on some aspect of patient-provider communication, cultural competence, and shared decision-making based on local needs.”
Mandi says her group’s projects would not be possible without the initial grant from The Pfizer Foundation and the foundation’s renewed commitment to its work. To support the initiative’s mission, Mandi and her team are building a powerful collaboration with providers, researchers, and patient advocates from GW, Fenway Health, LGBT HealthLink, the Sexual and Gender Minority Research Office of the National Institutes of Health, Massachusetts General, Harvard, Oregon Health & Science University, the University of Maryland, Howard University, Kaiser, and a variety of patient advocacy organizations. “We need philanthropy to address our mission because it takes resources to bring together national experts to advance care in this way and to conduct such a complex project, which included a great deal of formative research as well as development of a hybrid curriculum and a leap into the nascent area of implementation science,” she says. “The level of The Pfizer’s Foundation’s commitment to the institute and the willingness of colleagues across the U.S. to collaborate on this work is a testament to the glaring gap we are trying to address,” she says.
“The Pfizer Foundation is proud to support the important work of the GW Cancer Institute in advancing cancer care for vulnerable and underserved populations,” says Caroline Roan, Vice-President, Corporate Responsibility at Pfizer and President of The Pfizer Foundation. “We share the goal to strive for greater equity in health care delivery to ensure that individuals have access to quality health care.”
Quality health care is a result of collaboration and partnership among all involved, Tony says. “Doctors say, ‘We want you to live the best life you can, mentally and physically. We want you to come in and if we don’t know something, teach us.’ And we (patients) can teach you (physicians) something as well. That’s how we are going to see a dent in some of the disparities.” Lori Wilson, M.D., chief of surgical oncology at Howard University College of Medicine and Howard University Hospital and D.C. chair of the Commission on Cancer for the American College of Surgeons, has worked closely with the institute’s team in health equity— her area of expertise—as a reviewer of the full curriculum. “GW has really focused on patient-centered care in a very systematic way and has provided the support that the region needs to understand issues of disparities and health outcomes, how that impacts the community, and how we get all the players together to address this,” she says. Cancer care also requires compassion and communication, Mandi says. “We want to foster a culture of patient engagement for shared decision- making,” she says. “Providers go into these fields because they care. They are the experts on the therapies, but the patient is the expert on their body, their values, and what’s most important to them in terms of their goals of therapy. Having some attention to that is critical and that’s what we help do.”
Originally published in the print version of GW Impact - Fall 2017