*November 2020*

Communities sharing particular types of the disease are helping steer research towards better therapies.

Patient advocates often want immediate results but this can be at odds with the slow pace of scientific investigation. Yet clinicians and scientists who have collaborated with advocacy groups say they are an invaluable addition to the research ecosystem. “They’re engaged in the research in a way that I haven’t otherwise often experienced,” says Christine Bestvina, a thoracic oncologist at the University of Chicago Medical Center in Illinois.

“I do not have a scientific background whatsoever, but when you get diagnosed with a disease like lung cancer, you get highly motivated,” says Elkins. She and her fellow EGFR Resisters now routinely attend scientific conferences in the field. Seeing a dearth of EGFR-focused presentations, earlier this year they launched a programme in which patient advocates work with scientists and clinicians to award two-year, US$200,000 grants. Winners of the inaugural EGFR Resisters research award will be announced in January 2021.

Before deciding to fund external research, Elkins and other organizers of her group realized they needed to better understand the medical needs and treatment experiences of their community. So in 2018, they created a 130-question survey and, helped by Upal Basu Roy, vice-president of research at the LUNGevity Foundation in Chicago, they gained institutional review board (IRB) approval to gather data from hundreds of patients worldwide.

They found that nearly two-thirds of people taking EGFR inhibitors were hospitalized during their treatment, typically for side effects or symptoms related to the cancer. Many were also diagnosed with clinical depression, often accompanied by suicidal thoughts. These findings had not previously been reported in the scientific literature. Basu Roy applauds members of EGFR Resisters for crafting a “very powerful survey tool that really captures that patient’s unique data”, and he expects it to result in better disease and drug management. Read the entire article.