Joining Other Precision Medicine Stakeholders to Develop United Language for Testing

Posted on June 11, 2020 by Elissa Quinn, Associate Director, Precision Medicine

With more biomarker-targeted therapies becoming available, patient advocacy groups have increasingly talked about the challenge of confusing terminology for cancer testing. In March 2019, my colleague Philina Lee and I participated in a LUNGevity roundtable where industry partners and advocates further discussed this topic, and collectively voiced a need for action. The result: a working group was quickly formed. From biopharma, diagnostics and lab companies to patient advocacy groups and professional societies, we worked toward a common goal: adopting consistent, clear language that helps us effectively raise awareness for testing. In doing so, we believe it will reduce patient confusion, as well as improve communication and encourage shared decision-making between clinicians and their patients. Ultimately, we hope to establish testing as standard of care for all cancer patients. Working at a precision therapy company, my colleagues and I appreciated the opportunity to join with key stakeholders to advance these important efforts.

Personally, I’m so proud of the progress we’ve made. At the American Society of Clinical Oncology 2020 Virtual Scientific Forum, our working group published the abstract, “Using Consistent Terms in Precision Medicine to Eliminate Patient Confusion” (Abstract Number: e24164). Based on cross-stakeholder discussions and a patient survey, we’re advocating for two umbrella terms: “biomarker testing” for somatic (non-inherited) testing, and “genetic testing for an inherited mutation” and “genetic testing for inherited cancer risk” for germline (genetic) testing.

Building consensus was not easy. In an early meeting, we identified at least 33 different terms related to biomarker, genetic and genomic testing being used in patient education and clinical care. However, the importance of addressing this challenge has never been greater, as precision medicine continues to accelerate from promise to reality and patients hear about it more than ever before. The time is now to propose a solution, driven by the following recent advancements in precision medicine:

  • While the working group’s focus spanned tumor types, targeted therapy advances in lung cancer have initially demonstrated the transformative impact of precision medicine. About 30-35 percent of patients with advanced non-small cell lung cancer now have one of seven biomarkers that can be targeted with an FDA-approved therapy. Many other investigational, targeted drugs are being tested in clinical trials.
  • Testing reimbursement is becoming more widespread, with important progress made since CMS’s final National Coverage determination supporting reimbursement of a next generation sequencing test across all solid tumors.
  • There have been a number of advancements in testing technologies, such as the increased sensitivity of tests to detect biomarkers or the requirement for smaller tissue samples in certain cases. A range of options are available today, including liquid biopsy and RNA- and DNA-based, multi-gene testing panels.
  • Awareness of biomarker testing and increasing availability of targeted therapies have led cancer centers and hospitals to dedicate resources focused on precision medicine, and many centers have proactively established guidelines for who, when and how to test. In addition, enhanced interoperability of healthcare systems means testing results are more accessible to clinicians across a network of centers.

Using common testing terminology, we can help empower patients and their support networks to communicate effectively with care teams. I firmly believe that patients and their loved ones need to be their own best advocates. In addition, clinical guidelines highlight the importance of multi-disciplinary team communication to inform precision-guided treatment for lung cancer, and I would argue that patients are a critical part of that care team. In fact, some doctors are increasingly empowering patients to share their personal experiences with multi-disciplinary care teams, consisting of oncologists, nurse navigators, pathologists, surgeons, interventional radiologists and more.

In all, I’m grateful that stakeholders across the precision medicine ecosystem have come together to tackle an agreed-upon challenge: the plethora of terms used to describe testing. Now, we’re committed to adopting consistent testing terminology and communicating our results with others. We also recognize that the proposed solution isn’t a panacea; many other barriers must be overcome to help more patients realize the benefits of precision medicine. This project is particularly inspiring to me, because a broad range of stakeholders joined forces to identify and advocate for a uniform solution. I’m confident that together, we can tackle additional barriers with one voice for the benefit of patients.

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