Katia Cnop, Jessica Hawkins, Anita Chary, David Flood, Kirsten Austad, Boris Martinez, Waleska Lopez, Peter Rohloff
As Rosita walks through the halls towards her first radiology appointment, she cannot read a single sign. Nurses speak in Spanish nearby, but she cannot understand what they are saying. She passes women who look like her, dressed in their corte skirts and huipil blouses, some sitting on benches or blankets spread on the floor, some with children or husbands, some alone, all waiting for their appointments. It is 6 am at I.N.C.A.N, the national cancer hospital in Guatemala City, and the only semi-public hospital in the country with a linear accelerator for radiation. Rosita has stage 3 breast cancer; she has been waiting months for her appointment, and traveled six hours from her village to arrive to the city. “La utz yab’e?” (Are you ready?) a voice in Kaqchikel Maya says. She looks up to see Marta, her patient care navigator, smiling at her and holding a large folder filled with Rosita’s medical records. “Ja, xaxe ninxib’ijwi wi” (Yes, but I am scared) Rosita responds. They link arms and Marta guides her through the packed hallway to the end of the long check-in line.
As with much of the developing world, specialty care is concentrated in Guatemala’s urban centers; an estimated 80% of Guatemala’s physicians work exclusively in the capital city, and nearly half the population lives in rural areas [1, 2]. For indigenous Maya patients, barriers to life-saving medical care are not only geographical. Around half of Guatemalans identify as indigenous Maya, the majority of which live below the poverty line, and speak a Mayan language, making hospital trips economically and linguistically unfeasible . Life-saving specialty care for patients like Rosita quickly becomes overwhelming in the public system. In fact, before starting chemotherapy, Rosita had traveled to the infamously dangerous capital only once before, and without her patient care navigator, she likely would have never sought care.
As Rosita’s patient care navigator (PCN), Marta schedules all appointments, organizes transportation, coordinates with the medical team, and picks up medications. She accompanies Rosita to all appointments and treatments, and acts as an interpreter, advocate and social support. Everything is paid for by Marta’s employer, the medical non-profit Wuqu’Kawoq | Maya Health Alliance (WK | MHA), a non-governmental organization (NGO) based in Tecpan, Guatemala. WK | MHA provides high-quality health care services to the indigenous Maya population in their prefered language. Whenever possible WK | MHA providers go to their patients, conducting home visits and holding clinic in rural villages, but when complex treatment such as surgery or chemotherapy is needed, WK | MHA tries to eliminate barriers to the world class services available in Guatemala City. Marta’s role as a PCN is key to eliminating those barriers .
Figure 1: Rounded boxes indicate the start or end of a process. Multigons represent decision points. Boxes represent activity steps, green within the consult room and red outside of the consult room.
The concept of patient navigation was pioneered by Harold Freeman in the 1990s to reduce racial disparities in breast cancer related mortality between African-American and White women through increased social support, patient education, and clinical care access . PCNs have repeatedly improved cancer outcomes in high-income settings for vulnerable populations, and have been increasingly implemented in global health settings, bringing chronic disease management to populations who lack access to specialty care [5, 6]. Notably, the NGO Partners In Health (PIH) developed its patient accompagnateur program in Haiti, which provided a model for many organizations working in developing nations to increase health care availability . Through collaboration with the Haitian Ministry of Health, PIH trains lay community health workers (CHWs) as disease-focused accompagnateurs, specifically for HIV and tuberculosis patients. These CHWs bridge gaps in the public healthcare system by providing specialty care during regular home visits, offering psychosocial support and patient education, and identifying medication side effects and symptoms of opportunistic infections . The accompagnateur system contributed to a significant decline in HIV seroprevalence in Haitian prenatal clinics, and led PIH to duplicate the program in several sites globally [7, 8].
Possible, a NGO in rural Nepal, mediates barriers to care by incorporating PCNs into the their hospital in Accham. Through partnership with the Nepalese Ministry of Health, PCNs are provided to each patient as a hospital service, with the goal of improving patient flow and enhancing patient-provider communication . Similar to the public hospitals in Guatemala, public Nepalese hospitals serve an impoverished patient population with a low-literacy rate and little social capital. In an environment with high patient turnover, PCNs have become integral members in patient satisfaction and compliance, and overall hospital function, but do not provide external support, such as home visits or patient education .
These programs all aim towards a common goal of improving patient care and providing patient advocacy, and are structured and financed by non-governmental organizations. Rather than creating a parallel system of care, PCNs encourage participation in the mature, albeit fragmented, government-run health system. Rosita’s story is just one of many that demonstrates the critical role PCNs, like Marta, play to bring care to those who otherwise would get lost in the system. Our team at MHA | WK recently described our approach in the following paper.
Anita Chary, MD PhD is a physician in the Department of Emergency Medicine, Massachusetts General Hospital and Brigham & Women’s Hospital.
David Flood, MD MSc is a physician in the Departments of Medicine & Pediatrics, University of Minnesota.
Kirsten Austad, MD MPH is a physician in the Department of Medicine and Connor Center for Women’s Health, Brigham & Women’s Hospital.
Jessica Hawkins is a clinical research coordinator in the Department of Pediatrics at UCSF.
Katia Cnop is a medical student at Burrell College of Osteopathic Medicine.
Boris Martinez, MD is a physician with Wuqu’ Kawoq | Maya Health Alliance, Guatemala.
Waleska Lopez, MD is a physician with Wuqu’ Kawoq | Maya Health Alliance, Guatemala.
Peter Rohloff, MD PhD is a physician in the Departments of Medicine and Global Health Equity, Brigham & Women’s Hospital.
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