JUN 03, 2019 03:42 PM PDT

Making Cancer Language Patient-Friendly: A Multisector Call to Action

WRITTEN BY: Julia Travers

A May 2019 article in The Oncologist calls on members of the medical community to cooperatively create a resource of patient-friendly language for people navigating cancer treatment. The authors hail from various oncology-related offices of the U.S. Food and Drug Administration (FDA), and they recommend a multisector approach to help patients better understand essential oncology terminology in relation to treatment and trial decisions.

“We have increasingly learned from patient engagement and [FDA] public workshops that many patients have difficulty understanding trial terminology intended to convey a treatment’s benefit and the harms that may be associated with its use,” the authors write.

Patient with doctor illustration, credit: public domain

Progression-free survival, disease-free survival, overall survival and overall response rate are some of the concepts that may be under-explained or unclear to patients. The article proposes oncologists, members of the pharmaceutical industry, nurses, pharmacists, regulatory agencies, payers, health care providers and patient advocacy groups team up with patients to address this dilemma.

To tackle this problem, three general steps are suggested; the first is to work with patients and advocates to develop a better understanding of the issue and the content areas that are most in need of clarification. In the next stage, definitions of common terms could be “generated in an iterative dialogue” between patients and medical professionals.

The authors envision the development of an agreed-upon set of patient-friendly definitions, which could, in the third step of their suggested action plan, be communicated through multiple avenues, such as online resources, provider education campaigns and patient advocacy groups. For example, drawing on their interactions and conversations with patient groups so far, they came up with the following patient-friendly explanation of progression-free survival: “the median length of time after the start of this treatment that patients are alive while their cancer does not grow or spread.”

Patient with doctor, credit: public domain

The authors also point out that patient advocates are an increasingly vital resource for people with cancer, though many patients remain unaware of their existence. “This is especially true for medically underserved populations, including racial and ethnic minorities and individuals of lower socioeconomic status, as their ability to access health care is often more limited,” the authors state. Given this current imbalance, connecting more cancer patients to advocates will likely be an integral component of a successful patient-friendly language initiative.

About the Author
  • Julia Travers is a writer, artist and teacher. She frequently covers science, tech and conservation.
You May Also Like
JUN 18, 2019
Cell & Molecular Biology
JUN 18, 2019
Breakthrough Imaging Tool Shows How Pancreatic Cancer Forms
Scientists have learned that pancreatic cancer can form in two different ways, solving long-standing questions....
JUN 18, 2019
Genetics & Genomics
JUN 18, 2019
How High-fat Diets may be Driving a Rise in Colon Cancer
While cancer rates are dropping in general, colorectal cancer is becoming more common in people under the age of 55....
JUN 18, 2019
Genetics & Genomics
JUN 18, 2019
Tracking the Activity of a Cancer Gene
MYC is a proto-oncogene, meaning it can contribute to the development of cancer when it carries mutations....
JUN 18, 2019
Drug Discovery
JUN 18, 2019
Combination Immunotherapy Stops Liver Cancer Growth
The number of individuals diagnosed with liver cancer is on the rise and current therapies are largely ineffective. However, new preclinical data from the ...
JUN 18, 2019
Cancer
JUN 18, 2019
How Much Money Can Women Raise for Women Cancer ResearcHERS?
A new initiative from the American Cancer Society calls on female business and community leaders and influencers to raise funds for women cancer researchers....
JUN 18, 2019
Cancer
JUN 18, 2019
Blockchain and Cancer: How This Tech Is Changing Research and Treatment
As blockchain ledger technology becomes more prevalent in many fields that rely on technology, and the cancer and oncology community strives to better mana...
Loading Comments...