Empowering Voices: A Keynote on Engaging Community in Cancer Care

When Association of Cancer Care Centers (ACCC) President Nadine Barrett selected “Reimaging Community Engagement and Equity in Cancer” as the 2024-2025 theme, ACCC aimed to elevate programs and stories that embody this crucial message. The Community Health Worker Institute at Montefiore Health System aligns closely with this theme, making Kevin Fiori, MD, MPH, MSc, FAAP—director of the Community Health Systems Lab, associate professor of Pediatrics and Family and Social Medicine, director of Social Determinants of Health, Office of Community and Population Health at Albert Einstein College of Medicine, and director of the Community Health Worker Institute at Montefiore Medical Center—a natural choice to open Day 2 of the 41^st National Oncology Conference (NOC) in Minneapolis, Minnesota, on October 10, 2024.

Integrating the Community into Clinical Practice

“I spend a lot of time asking, ‘How do we integrate community expertise into health care?’ That’s been my focus for the past 20 years,” said Dr. Fiori. “We often look at our community and we see the gaps and deficits. But there’s a lot of expertise to be found [in the community].” He believes that opportunity exists at the intersection of learning, community, and health care delivery, and it is there that health care can be fully optimized.

Dr. Fiori opened with the story of his friend Rose, whom he met in 2003 in Togo. At the time, Rose had been recently diagnosed with HIV, lost both her daughter and husband to the disease, and was kicked out of her house by her husband’s family. “In 2003 in West Africa, HIV was essentially a death sentence, and the health system was failing her,” he explained. It was at that point that Dr. Fiori began his mission to integrate community health workers (CHWs) into clinical practice.

He defined CHWs as frontline public health workers who are trusted members, and/or have a close understanding, of the community they are serving. “These are people who have walked in the shoes of the patient,” Dr. Fiori emphasized. “Because they have this trusting relationship with the community, they bring greater understanding to your health system.” This trusting relationship then allows the CHW to serve as an intermediary between health services and the community to facilitate access to key services and improve the cultural competence of service delivery. “The value of a community health worker translates into better care, which is a simple concept—but not,” said Dr. Fiori.

Rooted in Evidence-Based Guidelines

The first case for CHWs outlined in the keynote address followed the Association Espoir pour Demain–Lidaw in Kara, Togo, whose name translates to Hope for Tomorrow. With no existing HIV treatment option available in Togo at the time, this group set out to bring treatment options to northern Togo. Regions like Togo were largely neglected from funding and aid, as the bulk of HIV cases were concentrated in southern countries of sub-Saharan Africa, and prevalence was relatively low in West Africa compared to its southern neighbors.

In response, Association Espoir pour Demain–Lidaw adapted evidence-based guidelines to community-directed HIV/AIDS initiatives with a focus on medical/psychosocial ambulatory and inpatient services. These included pharmacy and nutrition support; antiretroviral education, distribution, and follow-up; orphan and vulnerable children support; and the prevention of mother-to-child transmission. The foundation of all these services was CHWs—specifically, people who had previously been diagnosed with HIV themselves. The results were staggering. After a decade of this initiative, 1817 individuals living with HIV were engaged in care, 5 HIV/AIDS-dedicated health care centers were established, 1397 adults and children started antiretroviral therapy, and 70 Togolese staff members were trained as CHWs. “This last piece is what I’m most proud of,” said Dr. Fiori. “This was not a US-based intervention where we came in and told them what to do. The community members played active roles.”

Removing Barriers to Primary Care

The second case Dr. Fiori outlined was the creation of an integrated primary care program, born out of a need for CHWs in rural health centers. “Our hypothesis was that if we improve quality of care and access, we would improve mortality,” explained Dr. Fiori. In practice, this entailed training CHWs, equipping them to expand the reach of health care to patients’ front doors, and having mentored nurses and midwives provide high-quality care to patients at public center clinics. To improve patient access, Dr. Fiori sought to improve the supply chain and infrastructure to ensure that patients could receive necessary medicine and health products; in addition, it involved removing point-of-care fees for infants and children younger than 5 years and for pregnant women so that financial toxicity would not act as a barrier to care.

“We saw a 30% decline in mortality over a 5-year period in infants and children under 5 years due to increased access to community health workers,” Dr. Fiori shared. As the number of households that reported a visit from a CHW within 12 months of an intervention increased, mortality rates decreased. “The reason why is that they had a connection to the health system through their community members,” emphasized Dr. Fiori.

Bringing Togo’s Model to the US

Dr. Fiori’s third and final case for the CHW model was the Community Health Worker Institute at Montefiore Einstein. He emphasized the need to integrate social care into medical care, given that health care only contributes to 20% of a person’s health. The remaining 80% is made up of socioeconomic factors, a patient’s physical environment, and health behaviors like diet and exercise. “You have to know what your patients’ problems are in order to help them,” stressed Dr. Fiori.

To identify and address these needs, Dr. Fiori and his team launched a social needs screening and referral initiative in 2018 to great success. Within the first 5 years, Montefiore screened 256,096 patients, and information on 37,794 patients with social needs was captured in the medical record. Food insecurity, housing quality, and housing insecurity were identified as the top needs. In an attempt to determine how to boost screening of these social needs, the team found that introducing a CHW made the screening rates skyrocket.

With that knowledge in hand, the Montefiore team developed 2 goals. First, to optimize CHW recruitment, integration, and retention within clinical care. Second, to bring jobs to Bronx community members in the Bronx. “We knew there was community expertise we were not utilizing,” recounted Dr. Fiori. “We wanted to provide Bronx-based households with employment opportunities.” Bearing in mind that many of these new recruits had not had a job before, he stressed the need to fully invest in their CHW training.

Montefiore’s professional development and coaching model for CHWs included a wide array of training to build core skills, such as education and disease prevention, building a community profile, and referring patients to social needs resources. They also developed 2 CHW effectiveness outcomes: Status of Service (based on the CHW’s ability to complete a referral to social services with the patient) and Status of Need (a patient-reported outcome measure that assesses improvements on the social need being addressed). To prevent patients from falling through the cracks, the team also built out a database to record every patient interaction.

Innovation in Unique Places

To close out his keynote speech, Dr. Fiori divulged the following lessons learned from his experiences in CHW initiatives over the last 2 decades:

• Leveraging community expertise brings different approaches to clinical care as well as a valuable combination of personal experiences that can’t be taught.
• Integrating CHWs is promising, but it’s an approach that requires a substantial investment.
• Investing in CHWs leads to benefits beyond just health care, because it also serves as an investment in the health of the entire community.

Circling back to the story of his friend Rose in Togo, Dr. Fiori was proud to share that after starting on antiretroviral therapy in 2004, she became a CHW the following year. Today, Rose is a mentor in Togo’s CHW program and the director of pharmacy services. “I feel very strongly that there is innovation happening in unique places,” Dr. Fiori emphasized. “[It’s so important to] rely on the expertise of your community members.”