Authors: Andrew Ciupek, PhD, Associate Director of Clinical Research; Heather Law, MA, Associate Director of Lung Cancer Registry; Shanada Monestime, PharmD, BCOP, Director of Community Engaged Research; Daniel A. Saez, MSc, Manager of LungMATCH Navigation Program
2022 was an exciting year for GO2 for Lung Cancer. We had the privilege of publicizing our new mission and name, and resumed our annual COE Summit in-person for the first time since the COVID-19 pandemic began. For our research team, 2022 can be summarized in one word: growth. This growth spanned four areas: clinical research, community engaged research, patient education and navigation, and the Lung Cancer Registry.
Clinical Research
Utilizing the Centers of Excellence Network
In 2022, GO2 for Lung Cancer (GO2) continued efforts to increase clinical research for the lung cancer community and to ensure clinical studies were accessible and designed in a patient-centric way. We worked closely with our Centers of Excellence to directly bring new lung cancer research studies to patients across the country, especially in the community setting where most patients are receiving treatment. Over 27 centers partnered on a research study with GO2 last year. Among these were the SeroNet and CASTL studies. SeroNet is studying how lung cancer patients’ immune systems respond to COVID-19 and vaccines for COVID-19. CASTL focuses on understanding how best to offer smoking cessation help to those receiving lung cancer screening.
Making Research Participation Accessible
GO2 also worked our medical research consortium, the Addario Lung Cancer Medical Insitute (ALCMI), to develop more ways to allow patients to participate directly in lung cancer research in their local communities or even their own home. The Epidemiology of Young Cancer Study is an active study allowing people who were diagnosed with lung cancer under the age of 50 to provide information and blood samples to better understand the factors that contribute to younger people developing the cancer. The SPARK Study is another active study where blood samples provided by people with KRAS-positive non-small cell lung cancer are being used to understand why certain KRAS-targeted treatments may stop working for some patients.
Addressing Health Disparities
More than ever before, GO2 drove research aimed at increasing the number of patients that can access a clinical trial or research study. We partnered with INOVA Schar Cancer Insitute, Vanderbilt University Medical Center and the University of Alabama at Birmingham on the STRIDES Study to better understand why Black people with lung cancer are underrepresented in lung cancer research studies and what support or initiatives can be started to help close this disparity. Through our LungMATCH treatment and trial navigation program and GO2/ALCMI clinical trials, we used data to better understand the barriers patients experienced when joining trials and barriers to opening clinical trials closer to patients. We shared some of these findings at the World Conference on Lung Cancer 2022. The research team remains committed to driving patient-centric clinical research and will continue to bring new trials to the lung cancer community while working to ensure all patients that want to participate in a research study have the opportunity.
Community Engaged Research
Community engaged research at GO2 is aims to build partnerships with community-based organizations and healthcare institutions to address gaps in lung cancer health inequities through research interventions. The core focuses are to (1) build partnerships with community members serving those or who are at risk, diagnosed or living with lung cancer (2) obtain funding to carry out research interventions geared toward addressing health inequities in marginalized populations and (3) contribute to the lung cancer community.
Building partnerships
We’ve expanded our reach to build meaningful partnerships in the lung cancer community, including:
- University of Miami
In partnership with the University of Miami, GO2 has participated in health fairs in underserved communities to further understand and spread awareness on lung cancer awareness in the Black/African American and Hispanic populations. We will continue our community efforts and seek partnerships to spread awareness, increase education and address disparities across the lung cancer care continuum. - County and State Partnerships
GO2 is intentional about creating partnerships to address health inequities in the lung cancer community. We’ve analyzed county-level data to understand differences in lung cancer incidence and mortality rates by race/ethnicity. From there, we started mapping out a strategic plan to work with organizations within states exhibiting high disparity rates to discuss and develop partnerships to improve outcomes. To address disparities in lung cancer screening and biomarker testing in the African American community, we’re working with the Iowa Cancer Coalition’s Black Hawk Committee. Our engagement in 2023 will continue to broaden our reach across the states experiencing lung cancer racial disparities in mortality and incidence. - LatinX and Hispanic Patient and Caregiver Education
In 2022, we began developing an innovative education campaign for LatinX and Hispanic patients with lung cancer consisting of culturally sensitive education materials created with the help and oversight of thoracic oncologists of Hispanic or Latin descent. We’re excited to share these new materials for patients and caregivers in 2023.
Research funding
The READY-Lung Project: Readiness of Economically Disadvantaged African Americans Developing an Initiative to Yield Change in Lung Cancer Awareness, Screening, Treatment and Supportive Care received funding and will be carried out in 2023 in partnership with the YMCA in South Florida.
Contributing to the lung cancer community
Multiple national presentations were made by our team to educate and raise awareness of issues affecting underserved populations who are living with or at risk for lung cancer. We look forward to delivering many more presentations and sharing insights with the lung cancer community in 2023.
Lung Cancer Registry
In January 2022, GO2 for Lung Cancer launched an improved and expanded our global Lung Cancer Registry. The Registry empowers people living with lung cancer to share their individual experiences through confidential online survey questions about their medical history and diagnosis, treatment, outcomes and quality of life.
A survey for caregivers (i.e., loved ones of people living with lung cancer) was later released in March. The International Caregiver Survey is focused on understanding the experiences of people who help care for those living with lung cancer. The information collected will directly guide caregiver support programs and resource development at GO2 for Lung Cancer.
In addition to English, Lung Cancer Registry surveys were made available in Spanish, French, German, and Simplified Chinese. The overall purpose of the Registry is to empower people with lung cancer and their caregivers by giving them the opportunity to tell their own unique stories. These stories then give researchers the facts and data they need to help improve lung cancer care.
The Lung Cancer Registry received funding from Amgen Inc. for two new projects that were initiated in 2022.
- Increasing Biomarker Testing Education and Rates through the Lung Cancer Registry and LungMATCH
This project will utilize the Lung Cancer Registry to identify people who have not received comprehensive biomarker testing and to educate and inform them about testing to ensure proper care pathways via LungMATCH. - Co-Creation of a Small Cell Lung Cancer Survey (SCLC) Module in the Lung Cancer Registry
A new SCLC survey module will be launched in 2023 to learn more about the understudied SCLC patient population and perform outreach to specifically recruit more SCLC patients to join the Registry.
Last year marked the return to in-person conferences, and GO2 for Lung Cancer staff were able to share findings from Lung Cancer Registry data both globally and virtually. Notably, the results from the Sexual Health Assessment of Women with Lung Cancer broke the silence on women’s sexual health and received notable attention when presented at the World Conference on Lung Cancer.
2022 was truly a transformative year for the Lung Cancer Registry with the launch of a new online global platform, newly funded projects and opportunities to share our findings.
Patient and Caregiver Engagement and Navigation
2022 marked another successful year for GO2’s treatment and trial navigation program, LungMATCH. The goal of LungMATCH has always been to provide patients and caregivers with education to empower them in their treatment journey. This goal is met through the creation of print and online materials as well as one-on-one concierge style treatment navigation. 2022 saw a 7% increase in the number of patients helped and maintained a 40% match rate for patients and caregivers seeking clinical trials.
In addition to LungMATCH navigation, our research team focused on receiving feedback from patients and community leaders on the current state of biomarker testing for non-small cell lung cancer. The consensus was that biomarker test results provided by industry to physicians are overly complicated for patients–to the point where results can become confusing and ultimately unhelpful. GO2 responded to this in 2022 by beginning an effort to create avenues for patients and caregivers to receive simplified reports which give patients and caregivers immediately actionable information. In 2023, GO2 looks to refine this process and make access to this tool accessible for broad populations of patients.
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