Liza Fisher is a 38-year-old part-time yoga instructor, former flight attendant, and person of color who’s been living with Long COVID-related tremors since 2020. After seeing countless specialists who failed to treat her debilitating convulsions, she joined the growing number of patients who are making their voices heard and collaborating with scientists to further treatment-targeted studies. Once just the subjects of medical research, these patients are now becoming partners in the process.*

Patient-Led Research Catching On

There is increasing realization that patient perspectives can be valuable in designing research, in addition to being more equitable for the patient. Patients are logging symptoms online, helping devise survey questions and strategies, and are ultimately helping to raise awareness of results. 

Survivor Corps founder Diana Zicklin Berrent explains that patients are able to see inefficiencies in the study process better than researchers who are too engrossed in the details. The Long COVID patient advocacy group has been working with various medical researchers at institutions such as Yale University. In fact, due to technological advancements that enable real-time sharing of emotional support and symptoms data online, many major research institutions have initiated patient-led studies.

Getting in Tune with Patients

Patients and researchers aren’t always on the same page, especially during a pandemic when treatments are a high priority. Assistant professor Nabil Natafgi, Ph.D., M.P.H., of the University of South Carolina’s (USC) Arnold School of Public Health, explained that COVID-19 has forced researchers to rethink patient engagement and make their studies more relevant to patients.

As coronavirus becomes more of a societal norm, like the flu, the need for Long COVID treatments only increases. While recent legislation proposed by Senator Tim Kaine (D-VA) would provide greater treatment access to people with Long COVID, in order to fulfill its promise, experts say patients would need to be involved in the research process from its earliest stages, and they would need to provide more than just lab samples or test data to resolve scientific questions.

A Unique Challenge and Opportunity

Tuttle explains that pandemic restrictions necessitated a new approach to research in which participants received study drugs via delivery and had to monitor symptoms at home. Other unique challenges also arose with coronavirus: its wide-ranging symptoms, incomplete recovery, and new symptoms emerging after recovery.

This lack of knowledge has presented new opportunities for researchers who value patient input. Said Yale cardiologist Harlan Krumholz, “There were no specialists. The people who had the wisdom [about Long COVID] were the people experiencing it.” This “opened a lot of people’s eyes to a different way of doing research.” 

Krumholz created a platform called Hugo Health that allows patients to partner with researchers by linking to their electronic health records, pharmacy, and smartwatch data. The platform now offers Kindred, an app that allows long COVID patients to interact, get expert information, and assist researchers with data collection for a forthcoming study of underlying disease mechanisms.

Meanwhile, a study of antibody test results and long COVID symptoms by the Patient-Led Research Collaborative is about to begin, and the National Institutes of Health’s 4-year RECOVER initiative has been underway for the past year. 

Research Forever Changed?

Diana Zicklin Berrent, Liza Fisher, and other Survivor Corps members are listed as co-authors in a study on long COVID-related tremors, yet to be peer-reviewed, done in conjunction with Yale and the University of Pennsylvania, The study revealed patterns in patients’ description of symptoms and clinician responses.

Fisher says that she never anticipated being in a study. It was awkward at first, but she’s gotten over the feeling of being a guinea pig knowing that her patient-centered research will help people even outside of Long COVID. To her, patient-centered research isn’t just growing, but “transforming.”

Berrent believes long COVID will forever change how we conduct research. “Once you’ve seen science move at warp speed, you’ll never go back.”

*Sellers, F.S. (2022, April 3). How long covid is accelerating a revolution in medical research. The Washington Post. https://www.washingtonpost.com/health/2022/04/03/long-covid-research