Adopting Consensus Terms for Testing in Precision Medicine

Abstract

PURPOSE Despite the well-understood benefits of biomarker and genetic testing in precision medicine, uptake remains low, particularly for patients with low socioeconomic status and minority ethnic backgrounds. Patients report having limited familiarity with testing terminology and may not be able to accurately explain testing's role in treatment decisions. Patient confusion and lack of understanding is exacerbated by a multiplicity of overlapping terms used in communicating about testing. A LUNGevity Foundation–led working group composed of five professional societies, 23 patient advocacy groups, and 19 industry members assessed and recommended specific terms for communicating with patients on testing for tumor characteristics and germline mutations. METHODS Members completed a precision oncology testing framework analysis (biomarkers, germline variants, testing modalities, biospecimen, and commonly used testing terms) for nine solid tumors and blood cancers. The evaluation was segmented into terms that distinguish between somatic and germline testing. Additional data were captured in a comprehensive survey (1,650 respondents) led by FORCE (Facing Our Risk of Cancer Empowered) on patient preferences on germline testing terms. RESULTS Thirty-three terms were noted in patient education related to biomarker, genetic, and genomic testing. Biomarker testing was selected as the preferred term for testing for somatic (acquired) alterations and other biomarkers. Genetic testing for an inherited mutation and genetic testing for inherited cancer risk were selected as the preferred terms for testing for germline variants. CONCLUSION Democratizing comprehension about precision oncology testing through intentional use of plain language and common umbrella terminology by oncology health care providers and others in the oncology ecosystem may help improve understanding and communication, and facilitate shared decision making about the role of appropriate testing in treatment decisions and other aspects of oncology care.

Patients at the Heart of the Scientific Dialogue: An Industry Perspective

“…As mentioned earlier, to ensure scientific manuscripts and their data are comprehensible to patients, PLS have emerged as a tool that offers a suitable reading level for patients, especially as it comes to complex content such as statistics, which eventually saves time and burden of reading advanced scientific data [13,16,33,34]. PLS should be peer-reviewed, not be oversimplified to avoid patronizing, and should rely on standard terminology to avoid confusion [35]. Enhanced content such as infographics and video abstracts are also increasingly used to optimize engagement [33,36].…”

Improving access to oncology publications for advocates and people with cancer

“…Infographics can be an effective means to visualize data, especially to explain the design of clinical trials in progress or the results of trials reporting complex biomarker data. We also support efforts to reduce confusion by striving for consistent terminology, such as the recent recommendations for consistent plain‐language terms for precision oncology testing, which have been proposed by a multistakeholder group of patient advocacy organizations, professional societies, and industry representatives 45 …”

“…We also support efforts to reduce confusion by striving for consistent terminology, such as the recent recommendations for consistent plain-language terms for precision oncology testing, which have been proposed by a multistakeholder group of patient advocacy organizations, professional societies, and industry representatives. 45 Although people with cancer are exposed to information of vary quality across the internet and social media,…”

An Expert, Multidisciplinary Perspective on Best Practices in Biomarker Testing in Intrahepatic Cholangiocarcinoma

“…To avoid confusion and to be consistent with the adoption of consensus terms for testing in precision medicine, the term biomarker testing will be used hereafter when referring to testing that is performed to identify genetic alterations. 1 While liquid biopsies are emerging as a significant tool for biomarker testing, a description of the technique and utilization of liquid biopsies for patients with intrahepatic cholangiocarcinoma (iCCA) is beyond the scope of the article.…”