WASHINGTON, DC (July 7, 2020) — A LUNGevity Foundation-led consortium of 41 leading patient advocacy organizations, professional societies, and industry partners has published a white paper detailing recommendations for the use of testing terminology in precision medicine for patient education throughout the cancer community. Use of consistent language will significantly improve patient awareness and understanding of potentially lifesaving testing options available for both new cancer diagnoses and progression or recurrence of disease.
Research shows that despite widespread acceptance of the importance of testing, actual testing rates lag far behind best-practice recommendations for both biomarker testing for somatic (acquired) mutations and other biomarkers, and for germline genetic testing for identifying germline (inherited) mutations (also known as variants). Analysis by The Consistent Testing Terminology Working Group (Working Group) indicates that language disparity is a primary obstacle to patient communication with providers about testing for their specific cancer type. Further, development of consistent language can increase patient understanding and communication, facilitate shared decision making, support value-based care, and assure concordance in policy development.
The Working Group is a consortium of 20 cancer patient advocacy groups representing solid tumor and hematologic malignancies, three professional societies, and 18 pharmaceutical and diagnostic companies and testing laboratories. Over the course of many years, multiple activities, led by numerous individual patient advocacy organizations and professional societies, have developed the groundwork for this effort. The Working Group has launched a multi-faceted dissemination and communications effort to ensure that its recommendations and supporting materials are widely available among all key stakeholders within the cancer ecosystem, including providers, patient advocacy organizations, guidelines agencies, payers, and policymakers.
In developing its recommendations, the Working Group, first convened in 2019 by LUNGevity Foundation, identified 33 terms related to biomarker, genetic, and genomic testing that were being used in patient education and clinical care within the different cancer communities. In many cases, multiple terms were used to describe the same test. Various testing modalities, the source of testing samples, and the multiplicity of gene mutations currently identifiable by testing were contributing factors in this often-confusing overlap.
In the final analysis, three umbrella descriptor terms emerged as recommendations from the Working Group’s milestone exploration: “Biomarker testing” was selected as the preferred term for tests that identify characteristics, targetable findings, or other test results originating from malignant tissue and blood; “genetic testing for an inherited mutation” and “genetic testing for inherited cancer risk” were selected as consensus terms for tests used to identify germline (inherited) mutations.
"Far too many patients across all cancer types are still missing out on essential tests for biomarkers and inherited mutations indicating cancer risk," said Michelle Shiller, DO, AP/CP, MGP, Co-Medical Director of Genetics at Baylor Sammons Cancer Center and Staff Pathologist at Baylor University Medical Center. "With rates of biomarker testing and genetic testing for an inherited mutation at sub-optimal levels for numerous patient populations, patients are not benefiting from biomarker-directed care or not learning about their inherited cancer risk. Confusion around testing terms is a driving factor in this undertesting and ultimately has a detrimental impact on patient care."
Adds Nikki Martin, Director of Precision Medicine Initiatives at LUNGevity Foundation, “When someone is diagnosed with cancer, they’re swept into a whirlwind of bewildering words and complex, pressing decisions. Our Working Group’s goal is to help calm that storm of confusion with clear and consistent language that facilitates communication and medical decision-making. A unified voice and message from providers, industry, and the patient advocacy community about testing is absolutely vital to optimal cancer care.”
An abstract on the Working Group’s recommendations was published in May 2020 as part of the American Society of Clinical Oncology (ASCO) Annual Meeting Virtual Library.
The White Paper can be viewed in its entirety at www.CommonCancerTestingTerms.org.
Working Group participating organizations include:
Patient Advocacy: CancerCare; Cancer Support Community; The Cholangiocarcinoma Foundation; Clearity Foundation; Colorectal Cancer Alliance; Fight CRC; FORCE (Facing Our Risk of Cancer Empowered); International Cancer Advocacy Network; Leukemia & Lymphoma Society; The Life Raft Group; Lymphoma Research Foundation; Living Beyond Breast Cancer; Lung Cancer Action Network (LungCan); LUNGevity Foundation; National Lung Cancer Roundtable (American Cancer Society); PanCAN; Personalized Medicine Coalition; Prostate Cancer Foundation; Ovarian Cancer Research Alliance (OCRA); Sharsheret (The Jewish Breast & Ovarian Cancer Community); and Susan G. Komen.
Industry Partners: Abbvie; Amgen; AstraZeneca; Blueprint Medicines; Boehringer Ingelheim; Bristol-Myers Squibb; Caris Life Sciences; Eli Lilly and Company; Foundation Medicine; Genentech; GlaxoSmithKline (GSK); Novartis; Myriad Women’s Health; NeoGenomics; Pfizer; Personal Genome Diagnostics (PGDx); and Thermo Fisher Scientific.
About LUNGevity Foundation
LUNGevity Foundation is the nation's leading lung cancer organization focused on improving outcomes for people with lung cancer through research, education, policy initiatives, and support and engagement for patients, survivors, and caregivers. LUNGevity seeks to make an immediate impact on quality of life and survivorship for everyone touched by the disease—while promoting health equity by addressing disparities throughout the care continuum. LUNGevity works tirelessly to advance research into early detection and more effective treatments, provide information and educational tools to empower patients and their caregivers, promote impactful public policy initiatives, and amplify the patient voice through research and engagement. The organization provides an active community for patients and survivors—and those who help them live better and longer lives.
Comprehensive resources include a medically vetted and patient-centric website, a toll-free HELPLine for support, the International Lung Cancer Survivorship Conference, and an easy-to-use Clinical Trial Finder, among other tools. All of these programs are to achieve our vision—a world where no one dies of lung cancer. LUNGevity Foundation is proud to be a four-star Charity Navigator organization.
Please visit www.LUNGevity.org to learn more.
About Lung Cancer in the US
- About 1 in 16 Americans will be diagnosed with lung cancer in their lifetime.
- More than 228,000 people in the US 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 is caught before it spreads, the chance of 5-year survival improves dramatically.