Covid-19 Patients Are Doing Their Own Research

The work of the Patient-Led Research for Covid-19 group—including a rapid survey and analysis of 640 patients and a detailed paper tracking symptoms in thousands of patients who have been sick for over 28 days—is helping to drive a larger reckoning about how science values and uses knowledge produced by outsiders.

“Covid has helped us see some of our blind spots in the clinical and research enterprise,” said Dr. Helen Burstin, CEO of the Council of Medical Specialty Societies, which focuses on improving care and health research. “We need to figure out how we actually work with patient-led research efforts when the patients are the ones in leadership.”

Citizen science, the name given to a range of scientific projects in which patients participate, covers myriad experiences. Some patients create and run their own experiments, sharing consumer DNA and blood test results and tracking body temperature, heart rate and other biological measures. Programs such as the Patient-Centered Outcomes Research Institute, an independent nonprofit authorized by Congress, boost collaboration with professional scientists by requiring that researchers seeking funding involve patients in the design and development of studies.

Covid citizen scientists generated information about symptoms, such as neurological issues, that didn’t garner a lot of attention at the start of the pandemic. They highlighted the overlooked challenges faced by people whose symptoms last longer than 28 days. The studies were limited by drawing largely from patients who joined online support groups, but they gained the kind of recognition by professional scientists that citizen science doesn’t always get. Francis Collins, the director of the National Institutes of Health, the biggest funder of biomedical research in the U.S., highlighted Covid citizen science in his blog on the NIH site earlier this month, citing the work of the Patient-Led Research for Covid-19 group for providing “a first-draft description” of aspects of the disease.

The pandemic has created an opening for citizen scientists, because even now clinicians don’t fully understand the virus. Early clinical trial data comes mainly from studies involving hospitalized patients, whose experiences may not apply to those who are suffering but don’t end up in the emergency room.

“There is a real gap in the medical data. We had to figure out things for ourselves,” says Diana Berrent of Long Island, N.Y., who set up an online group of Covid patients, called Survivor Corps, after she was diagnosed last March. When a friend who also had Covid told her she suffered from constant ringing in the ears, Ms. Berrent polled others in the group asking if they had similar experiences. She was surprised by the number of responses and the impact it had on people’s quality of life. The symptom got added to a 5,600-person survey that Survivor Corps and the Indiana University School of Medicine conducted about patient experiences.

Patients who want to lead Covid research projects often must navigate tension between their sense of urgency and the traditional scientific process, which typically requires a long peer review process before publication in a journal, said Emily Sirotich, a Ph.D. student at McMaster University in Canada. On March 12, the day the WHO declared Covid a pandemic, Ms. Sirotich joined a Twitter conversation between rheumatology patients and doctors, who were on equal footing when it came to Covid: No one understood the disease. “Everyone was worried,” she said.

The patients and doctors formed the Covid-19 Global Rheumatology Alliance on a Slack channel. They decided to create two data-generating sources, a physician-directed international registry of rheumatic patients with Covid and a patient-driven experiences survey. “The idea exploded overnight,” said Ms. Sirotich. A steering committee of physicians and patients secured funding for the project through the American College of Rheumatology, a professional organization, with the majority of funds coming from pharmaceutical companies. Members of the steering committee and the eight-person patients’ board—including Ms. Sirotich, who serves as Patient Engagement Lead— receive honorariums for participating.

Patients wanted to share the survey data right away, but the researchers argued that the scientific community wouldn’t use the information to inform patient care without the validation of going through peer review. “It has to be accurate,” said Ms. Sirotich.

The two groups tried to strike a balance, Ms. Sirotich said. Patients created overview summaries of the raw data that they immediately disseminated to support groups for use in personal decision making. The physicians and patients also co-wrote and submitted articles with more detailed data analysis to peer-reviewed journals and conferences.

“Covid gave us the opportunity to show that patients can produce valid data and reliable information about what they are experiencing,” Ms. Sirotich said.

In December, the Patient-Led Research for Covid-19 group posted a paper based on analyzing data from over 3,700 patients to the MedRxiv public server, which professional scientists have used throughout the pandemic to quickly make results available to the wider community before peer review. The group also plans to submit the paper to a scientific journal.

Eric Topol, director of the Scripps Research Translational Institute in La Jolla, Calif., and a proponent of patients tracking their own health, tweeted the results. “There is a dearth of information about Covid,” Dr. Topol later said. As a professional scientist, he added, “The paper provided invaluable new insights to me.”

But other scientists questioned Dr. Topol’s decision to disseminate work that to them didn’t seem scientific enough. “I had concerns about the study,” said Adam Gaffney, a pulmonary specialist and instructor at Harvard Medical School. Dr. Gaffney said the decision to include data from people without positive Covid or Covid antibody test results called into question the researchers’ conclusions. “I think the standards and the methods should not be different depending on who is doing the research,” he said.

Given how few people could obtain Covid tests at the beginning of the pandemic, the patient researchers decided not to exclude valuable data, said Dr. Athena Akrami, 38, a neuroscientist at University College London and one of the paper’s authors, who had Covid. “If you only look at people with positive tests, you miss out on a whole piece of the science,” she said.

Gina Assaf, a founder of the Patient-Led Research group, said patient researchers need better access to the research infrastructure that professional scientists use. The group is now working with Dr. Burstin’s organization to try to develop a new collaborative model. “There is value beyond Covid in letting the people who experience the illness lead the research,” Ms. Assaf said.

Ms. McCorkell, who never anticipated turning into a Covid citizen scientist, said traditional science still takes too long to help patients. “We helped catapult Covid research way ahead of where it would have been had we not been doing this work,” she said.

Write to Amy Dockser Marcus at [email protected]