LUNGevity to Present Data from Study on Patient Empowerment at 2018 World Conference on Lung Cancer

Study illuminates obstacles to patients receiving education about their disease
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Linda Wenger
(973) 449-3214

WASHINGTON, DC (September 21, 2018) — LUNGevity Foundation, the nation’s leading lung cancer-focused nonprofit organization, announced today that data from LUNGevity’s Patient-Focused Research Center (Patient FoRCe)’s study—“Reaching the Unreached”—on gaps in dissemination of patient education will be presented at the International Association for the Study of Lung Cancer (IASLC) 2018 World Conference on Lung Cancer (WCLC) to be held this month in Toronto. This study is one of four that were accepted from LUNGevity to be shared at this year’s conference.

Patient education is imperative to understanding one’s diagnosis and making informed treatment decisions. However, many patients and their caregivers report that they do not receive materials or information from their healthcare providers (HCPs). “Reaching the Unreached,” a mixed-method study of over 200 healthcare providers from academic research centers, community cancer centers, and private practice, was fielded to identify attitude toward usage, distribution, and development of education materials.

Findings show that distribution practices for educational materials are not standard and tend to be subject to the HCP’s own discretion. Of the HCPs surveyed, surprisingly only 75% reported that lung cancer educational materials are distributed. Notably, there is a discrepancy in who actually does the distributing: nurse navigators and community cancer center administrators say oncologists most often distribute them (80%), while oncologists and pulmonologist claim they only distribute materials some of the time (56%).

“Health outcomes improve when patients are educated about their disease and can engage in shared decision-making with their healthcare provider,” Andrea Ferris, president and CEO of LUNGevity, said. “The results of this study demonstrate there is more to be done to ensure that patients are receiving education resources from their healthcare providers.”

Detailed results of “Reaching the Unreached” will be shared in Toronto at a poster presentation on September 26.

LUNGevity’s Patient-Focused Research Center (Patient FoRCe) is the organization’s in-house research institute that brings evidence-based research and scientific rigor to understanding the lived experience of people diagnosed with lung cancer. Patient FoRCE conducts, analyzes, and disseminates studies examining the perspective and voice of the patient in order to impact policy as it is developed, research as it is conducted, and treatment as decisions are made, ensuring patient centricity.

“Dissemination is important for all Patient FoRCe studies,” Dr. Upal Basu Roy, director of Patient FoRCe, said. “This ensures that relevant stakeholders—patients, caregivers, clinicians, regulators, and industry partners—are made aware of study findings and implications, with the ultimate goal of driving practice change.”


About LUNGevity Foundation

LUNGevity is the nation's leading lung cancer organization investing in lifesaving, translational research and providing support services and education for patients and caregivers. LUNGevity’s goals are three-fold: (1) accelerate research to patients, (2) empower patients to be active participants in their treatment decisions, and (3) remove barriers that patients face in accessing the right treatments.

LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as by providing community, support, and education for all those affected by the disease. LUNGevity’s comprehensive resources include a medically vetted website, a toll-free HELPLine in partnership with CancerCare®, a unique Lung Cancer Navigator app, peer-to-peer mentoring for patients and caregivers (LUNGevity LifeLine), and survivorship conferences. LUNGevity also helps patients find and navigate clinical trials through our Clinical Trial Finder tool, a Clinical Trial Ambassador program, and participation with EmergingMed.

Our vision is a world where no one dies of lung cancer. For more information about LUNGevity Foundation, a four-star Charity Navigator organization, please visit

About Lung Cancer in the U.S.

  • About 1 in 16 Americans will be diagnosed with lung cancer in their lifetime
  • More than 234,000 people in the U.S. will be diagnosed with lung cancer this year
  • About 60%-65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers
  • Lung cancer takes more lives than the next three leading cancers (colorectal, breast, and prostate) combined
  • Only 19% of all people diagnosed with lung cancer will survive 5 years or more, BUT if it’s caught before it spreads, the chance of 5-year survival improves dramatically