Foundation wants all patients with lung cancer to have ‘same opportunity for optimal care’
The nonprofit LUNGevity Foundation seeks to improve quality of life and survivorship for those touched by lung cancer while promoting health equity by addressing health disparities throughout the care continuum.
“Eliminating health care disparities and achieving health equity is a movement. We are in this movement to lead, listen to patients and act for sustainable change,” Jeanne Regnante, LUNGevity’s chief health equity and diversity officer, said during an interview with Healio. Social determinants of health (SDOH) contribute to health care disparities, Regnante added.
“These upstream factors need to be considered and multiple stakeholders must work together to deliver and advocate for the standard of care for all populations,” Regnante said, adding that a SDOH program focused on food security just won the Nobel peace prize.
“We can do this,” she said. “Every organization who supports and engages vulnerable communities for better health must address SDOH through policy, education, access programs and research. Supporting a mobile lung cancer screening unit in a rural high-risk community for better access to care is an example of addressing the issue of transportation, which is a SDOH. Doing this takes the community, health care providers, patient organizations and industry working together. During the COVID-19 pandemic, employment, health insurance coverage and food insecurity are all crises that contribute to the health of people — especially patients in vulnerable communities.”
In light of November being Lung Cancer Awareness Month, Regnante spoke with Healio about what prompted this work in lung cancer, strategies to ensure optimal care for vulnerable populations and the importance of community outreach efforts.
Question: What prompted this work in lung cancer?
Answer: There has been a public and professional outcry among multiple stakeholders for sustainable solutions to address health care disparities. In lung cancer, there has been significant progress in identifying biomarker subtypes and a resulting explosion of new targeted therapies approved by the FDA during the past 4 years. Unfortunately, everyone does not have the same access to innovation. Although lung cancer affects all populations in the U.S., some communities have a higher number of cases and lower survival rates and standards of care spanning the cancer care continuum, from screening and diagnosis to treatment and survivorship. This is alarming to us because early screening for any cancer is a high determinant of a more positive outcome.
Focusing on health care disparities across the cancer care continuum is essential, especially now. As a foundation, we have engaged patients by convening experts to answer their questions throughout the COVID-19 pandemic, and we have an excellent website for patients with content that is culturally sensitive and translated into Spanish. We must engage and educate all individuals at risk for lung cancer or who have lung cancer to be safe and receive the care they need, especially during this time.
Q: How is your foundation working to advance diversity and inclusion?
A: Diversity and inclusion work is core to our mission. We are committed to ensuring that all individuals diagnosed with lung cancer have the same opportunity for optimal care. We engage and listen to patients who are most affected by health and economic challenges to understand their plight and develop strategies to help them. Our vision is to secure the trusted engagement and partnership of the lung cancer communities to achieve health equity. Our strategy includes the establishment of a trusted lung cancer community network that works with cancer centers across high-risk geographic locations, focuses on delivering health-literate and culturally sensitive patient education and secures data on disparities across the lung cancer continuum of care.
Q: What communities may benefit?
A: Vulnerable communities, including racial and ethnic minority populations, people with low socioeconomic status, older patients, LGBTQ communities, immigrants and veterans.
Q: What are some examples of disparities in lung cancer?
A: According to Lathan and colleagues, national data show Black patients with lung cancer present with and are treated at a later stage, wait five times longer to see an oncologist, are less likely to undergo biomarker testing and do not receive new, innovative treatments. Further, Black patients have a 20% lower 5-year survival rate than whites. Disparities may be different for different demographics and vulnerable populations.
Q: What will future work entail?
A: We are growing a trusted lung cancer community network with NCI-designated cancer centers and have established partnerships focused on education to vulnerable communities across the country. To be successful with our goals, we need a process that complements how cancer center leaders engage their trusted network of faith-based organizations, senior centers and community centers. We need to establish peer-to-peer patient navigators in communities, which we have learned from other patient organizations and best-practice research, driven by the National Minority Quality Forum. We cannot just show up and say we are here now — we need to establish trust, processes and roles.
Q: What are some lessons learned from the work your organization has done so far?
A: The trusted way to reach patients for more timely screening and diagnosis is through the community. Ongoing implicit bias training also is critical for staff. We must have humility every day and listen to and learn from people in our communities. Having a presence in the community is a fundamental requirement for increasing visibility and developing trustful working relationships with vulnerable populations. Many cancer centers have this infrastructure. For example, they routinely invest time and effort with key community representatives to learn about the community’s needs and potential facilitators and barriers to research participation before approaching communities about research. There are established lay community navigators who facilitate trusted engagement of communities. Nothing about the community without the community.
Q: Is there anything else that you would like to mention?
A: Hiring interns is important, especially with this type of work. Young interns keep us on our toes, give us different perspective and do great work. They need a job, and we need to learn from them. Development and modeling best practices to address lung cancer disparities is critical work. We must work with all stakeholders to increase the representation of diverse populations in lung cancer research. We intend to gather a group of stakeholders and identify processes, roles, goals and decision rights to get to the ideal state. We want to develop a model framework that is intended to foster collaboration among and between health care systems, academia, industry, health care leaders, primary care physicians and patient organizations to promote successful inclusive research practices in lung cancer — one that will provide a roadmap for other disease areas.
For more information:
Jeanne Regnante can be reached at LUNGevity Foundation, P.O. Box 754, Chicago, IL 60690.
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