Dana-Farber Cancer Institute researchers have examined the historical evolution of community engagement and outreach initiatives at both the National Cancer Institute (NCI) and National Cancer Institute Designated Cancer Centers (NCI-DCC). The team’s evaluation of these activities and recommendations for future efforts were recently published in CA: A cancer magazine for doctors.
The number of lives cancer claims in the United States has decreased over the past 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’s community outreach and engagement programs designed to address them.
Founded in 1971, 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 wasn’t until 2012 that NCI-DCCs were required to rigorously define their catchment areas, the geographic areas each center “serves or “aims to serve the research being carried out.” , the communities you interact with, and the outreach you do.” Beginning in 2016, NCI-DCCs were required to provide specific descriptions of community engagement and outreach interventions.
“The purpose of this review is to help us learn what has worked and also what has been missing in terms of community outreach and engagement efforts,” says Christopher Lathan, MD, MS, MPH, clinical director of access and equity and associate director. Dana-Farber Medical Officer. “It is imperative that we ensure that everyone has access to the latest scientific advances, and that requires a sustained and dedicated focus on community outreach and engagement, clinical access and health equity.”
NCI-DCC has initiated several interventions aimed at decreasing health disparities and increasing access to innovative medications, clinical trials, and preventive services and reported many positive results. For example, a program started by Dana-Farber in 2012 to provide diagnostic and patient navigation services to a local federally qualified health center serving a predominantly black community helped reduce the time to cancer diagnosis by 32 to 12 days.
Due to an intense focus on scientific research, NCI-DCC has produced incredible advances in cancer prevention and treatment. But, the researchers 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 had not combined their scientific approach with an intense focus on including historically underserved patients in research trials, accessing treatment advances, and developing innovative delivery interventions.” of care to improve access in marginalized communities.” The new emphasis on community outreach and participation must be expanded to provide everyone with equal opportunities to benefit from innovative advances in diagnosis and treatment.
Researchers note that most of NCI-DCC’s community engagement and outreach work has focused on education and disparities research rather than deliberate expansion of care and interventions. Programs that have successfully reduced disparities have not yet been widely shared or replicated in ways that expand their impact. Furthermore, 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 the institutions themselves.” In producing the review itself, the authors committed to representing the views of those most affected; One of the authors, Barry Nelson, is a patient advocate who was an integral part of the writing process from start to finish.
The authors recommend the following:
- NCI-DCCs must engage the most impacted and marginalized communities proactively and bidirectionally and integrate this engagement into research and diagnostic efforts across the cancer center.
- NCI-DCCs should expand clinical access for patients across the spectrum of oncology services. This includes investing in the collection of demographic data (area measures of poverty, granular race, ethnicity, sexual orientation and gender identity) across the enterprise and utilizing evidence-based interventions through a highly developed implementation core that connects clinical operations and healthcare delivery. research and the basic research/translation company. Interventions must be integrated into the healthcare delivery system and not exist outside of it.
- NCI-DCCs must commit to evolving their current outreach and community engagement structure by committing to use their economic power to improve local communities through job training, educational collaborations, and health promotion. They should provide health education to their workforce and the communities in the area of influence.
- NCI-DCCs must establish and implement governance policies and standards, clearly demonstrating their commitment to elevating and empowering patient voices to facilitate equitable decision-making for inclusion, transparency, and professional integrity.
“We can and must have a marked impact on health outcomes for historically marginalized communities,” Lathan says. “What’s the point of developing new therapies if the communities that could benefit the most are those that can’t access them?”