- AffiliationSurvivor Corps
From the moment she came down with COVID-19 in early March 2020, Diana Berrent has been out front in America’s pandemic. Stricken with what was then an especially scary, stigmatized, and unknown disease, the Port Washington, N.Y., photographer went public with her case, penning a daily Coronavirus Diary for the New York Post in an effort to demystify and advance understanding of the disease. The same impulse led her, while still in isolation, to start Survivor Corps, a Facebook page that has since swelled into a community of more than 165,000 people who have experienced COVID. The organization, which Berrent started mainly to mobilize plasma donations, has morphed into something much broader. Part support group, part ready pool of research subjects, part nimble participant in pandemic response, Survivor Corps, which has partners across the health system, is now involved in activities as wide-ranging as connecting patients to critical antibody treatments, supporting clinical studies, and developing diagnostic standards for “long” COVID. Many companies have approached Berrent, looking to monetize the data of Survivor Corps’ members, an offer she always refuses. As she sees it, Survivor Corps is writing the playbook for a new collaborative era of “citizen science.” Key to it, she says, is transparency, equity, and empowering patients.