Investigators at Dana-Farber Cancer Institute have examined the historical evolution of Community Outreach and Engagement initiatives at both the National Cancer Institute (NCI) and National Cancer Institute-Designated Cancer Centers (NCI-DCCs). The team's assessment of these activities and recommendations for future efforts were recently published in CA: A Cancer Journal for Clinicians.
The toll cancer takes on lives in the U.S. has declined during the last 28 years, but not equitably. Disparities persist in many historically marginalized communities-including communities disadvantaged by race, socioeconomic status, sexual orientation or gender identity, and geographic location-despite NCI community outreach and engagement programs designed to address them.
Formed in 1971, the NCI recognizes 72 NCI-Designated Cancer Centers, including Dana-Farber. Improving community outreach and engagement has long been an important initiative for NCI, but it was not until 2012 that NCI-DCCs were required to rigorously define their catchment areas, the geographic areas that each center "serves or intends to serve in the research it conducts, the communities it engages, and the outreach it performs." Beginning in 2016, NCI-DCCs were required to provide specific descriptions of community outreach and engagement interventions.
"The purpose of this review is to help us learn what has been working and also what has been missing in terms of community outreach and engagement efforts," says Christopher Lathan, MD, MS, MPH, Chief Clinical Access and Equity Officer and Associate Chief Medical Officer at Dana-Farber. "It is imperative that we ensure everyone has access to the latest scientific advances, and that takes a sustained and dedicated focus on community outreach and engagement, clinical access, and health equity."
NCI-DCCs have initiated several interventions intended to decrease health disparities and increase access to innovative medicines, clinical trials, and preventive services and reported many positive results. For instance, a program initiated by Dana-Farber in 2012 to provide diagnostic and patient navigation services to a local federally qualified health center that serves a predominantly Black community helped reduce time to cancer diagnosis from 32 to 12 days.
Due to an intense focus on scientific research, NCI-DCCs have yielded incredible advances in cancer prevention and treatment. But, the investigators conclude, efforts to reduce disparities must be as focused, integrated, and sustained as those made to advance science. According to the authors, "Until recently, our NCI-DCCs have not matched their scientific focus with an intense focus on the inclusion of historically marginalized patients in research trials, access to treatment advances, and development of innovative care delivery interventions to improve access in marginalized communities." The newer emphasis on community outreach and engagement must be expanded to give everyone the same opportunities to benefit from the groundbreaking advancement in diagnosis and treatment.
The investigators note that most NCI-DCC community outreach and engagement work has been focused on education and disparities research rather than on the deliberate expansion of care and interventions. Programs that successfully reduced disparities have yet to be widely shared or replicated in ways that broaden their impact. Further, according to the authors, "Many patients, especially those from historically marginalized communities, or those who do not have traditional political or financial capital, feel that it is difficult to share their experiences, thoughts, and ideas for change directly with institutions themselves." In producing the review itself, the authors were committed to representing the views of those who are impacted most; one of the authors, Barry Nelson, is a patient advocate who was integral to the writing process from start to finish.
The authors recommend the following:
- NCI-DCCs should engage the communities most impacted and marginalized in a proactive, bidirectional manner and integrate this engagement into the research and diagnostic efforts across the entire cancer center.
- NCI-DCCs should broaden clinical access for patients across the spectrum of cancer services. This includes investing in the collection of demographic data (area measures of poverty, granular race, ethnicity, sexual orientation and gender identity data) across the enterprise and using evidence-based interventions via a highly developed implementation core that connects clinical operations, health care delivery research, and the basic/translation research enterprise. Interventions should be integrated with the healthcare delivery system, not exist outside of it.
- NCI-DCCs should commit to evolving their current structure of community outreach and engagement by committing to utilizing their economic power to improve local communities via job training, educational collaborations, and health promotion. They should provide healthcare education to their workforce and catchment area communities.
- NCI-DCCs should establish and implement governance policies and standards, clearly demonstrating their commitment to elevating and empowering those patient voices so as to facilitate equitable decision-making for inclusion, transparency, and professional integrity.
"We can and must make a marked impact on the health outcomes of historically marginalized communities," says Lathan. "What is the use of developing new therapies if the communities that could benefit the most are the very ones that cannot access them?"
