Advocate for Equal Access for Next Generation Sequencing and Clinical Trials
Janice is an oncology nurse in a rural community cancer center. Only one of the three oncologists in the practice discusses clinical trials with their patients and typically not until after patients complete two to three lines of therapy. Also, the practice does not have a process for when to order next generation sequencing (NGS). Janice feels it is not ethical that the patients coming to the clinic do not have equal access to those important services.
What Would You Do?
Supporting best patient care is every nurse’s ethical responsibility (https://www.ncbi.nlm.nih.gov/books/NBK526054/). Janice’s situation is not unique, and even the evidence is inconsistent on when to implement (https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(20)30231-5/fulltext) NGS or discuss clinical trials, resulting in missed opportunities for access to novel medications and therapy combinations.
Up to 50% of patients offered a clinical trial choose to participate (https://academic.oup.com/jnci/article/113/3/244/5918345). Yet around 20% of clinical trials fail because of insufficient patient accrual, and clinical trial participation rates (https://ascopubs.org/doi/10.1200/OP.20.01068) have hovered (https://academic.oup.com/jnci/article/113/3/244/5918345) from 2%–8% over the past several years. More patients must be offered clinical trials. Stringent eligibility criteria and distance to travel may hinder physicians’ and patients’ willingness to investigate clinical trial treatment options; however, expanded access to new therapies outside of a clinical trial may be an option for some patients.
Several organizations who can assist oncologists, nurses, and patients with potential treatment options (see sidebar). Nurses can empower patients and their loved ones to find and access clinical trials for potentially beneficial novel therapies by providing education on NGS and clinical trial matching services.
Janice discovers that several of her nursing colleagues feel the same sense of ethical responsibility to the patients in the practice. They request a meeting with the oncologists and present a plan to provide patient education on the implications of NGS testing and resources to clinical trials matching services. Six weeks later, the oncologists reported having easier discussions about NGS and clinical trials with patients who received the education and resources.