Investigators have examined the historical evolution of Community Outreach and Engagement initiatives at the National Cancer Institute (NCI) and NCI-designated cancer centers and provided recommendations to guide future efforts, according to a recent study published by Pohl et al in CA: A Cancer Journal for Clinicians.
Background
Cancer’s toll on U.S. individuals has declined over the past 28 years; however, disparities based on race, socioeconomic status, sexual orientation, gender identity, and geographic location persist in many historically marginalized communities despite NCI community outreach and engagement programs designed to address these inequities.
Since 1971, the NCI has recognized 72 NCI-designated cancer centers. Improving community outreach and engagement has long been an important initiative at the NCI, but it wasn’t until 2012 that NCI-designated cancer centers were required to rigorously define the catchment areas in which the centers intend to serve “in the research [they] conduct, the communities [they] engage, and the outreach [they] perform.” Beginning in 2016, NCI-designated cancer centers were also 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,” stressed senior study author Christopher Lathan, MD, MS, MPH, Chief Clinical Access and Equity Officer and Associate Chief Medical Officer at Dana-Farber Cancer Institute. “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,” he continued.
Key Findings
NCI-designated cancer centers have initiated several interventions intended to decrease health disparities and increase access to innovative therapeutics, clinical trials, and preventive services that have reported positive results. For instance, Dana-Farber Cancer Institute implemented a program in 2012 to provide diagnostic and patient navigation services to a local federally qualified health center serving a predominantly Black community. The program demonstrated an ability to reduce time to cancer diagnoses from 32 to 12 days.
Because NCI-designated cancer centers focus on scientific research, the institutions have yielded significant advances in cancer prevention and treatment. Nonetheless, the investigators emphasized that efforts to reduce disparities should be as focused, integrated, and sustained as those made to advance science.
“Until recently, our NCI-designated cancer centers 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,” indicated the study authors.
The investigators proposed that the more recent emphasis on community outreach and engagement should be expanded to provide all patients with the same opportunities to benefit from advancements in diagnosis and treatment.
The investigators noted that most NCI-designated cancer centers’ community outreach and engagement efforts have been concentrated on education and disparities research rather than on the deliberate expansion of care and interventions. Programs that have successfully reduced disparities have yet to be widely shared or replicated in ways that broaden their impact.
“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,” the study authors revealed.
Among the new recommendations to further reduce cancer disparities were that NCI-designated cancer centers should:
- Engage the communities most impacted and marginalized in a proactive, bidirectional manner and integrate this engagement into research and diagnostic efforts across the cancer centers
- Broaden clinical access for patients across the spectrum of cancer services—including investing in the collection of demographic data (area measures of poverty, granular race, ethnicity, sexual orientation, and gender identity) across the enterprise and using evidence-based interventions via a highly developed implementation core to connect clinical operations, health-care delivery research, and the basic/translation research enterprise. Interventions should be integrated with the health-care delivery system.
- Commit to evolving their current structure of community outreach and engagement by utilizing their economic power to improve local communities via job training, educational collaborations, and health promotion. They should provide health-care education to their workforce and catchment area communities.
- Establish and implement governance policies and standards demonstrating their commitment to elevating and empowering patient voices so as to facilitate equitable decision-making for inclusion, transparency, and professional integrity.
Conclusions
“We can and must make a marked impact on the health outcomes of historically marginalized communities,” underscored Dr. 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?” he concluded.
Disclosure: For full disclosures of the study authors, visit acsjournals.onlinelibrary.wiley.com.
