As a novel coronavirus, there was virtually no hard data on COVID-19 in March 2020 when the national lockdown occurred. And there’s still much about it that we don’t know. In an effort to study the new virus, countless COVID-19 research projects have been collecting data. However, if you’ve contributed your health information to a Covid symptom-tracking app or a daily email screener, it’s likely that the data collected has remained in the hands of the institution or system that created the survey.
As we were learning more about COVID-19 in 2020, it felt like new symptoms, guidance, and treatments for COVID-19 were coming out every day. Now we have standardized guidelines to protect ourselves because the growing body of data provided some clarity. And because of the voluntary participation of thousands of people in clinical trials, enough data were gathered to produce several different vaccines to protect everyone even more.
A similar strategy has the potential to improve our fight against the virus. If individuals with the condition known as Long or Long-haul Covid -- when symptoms persist for weeks or months -- were able to pool their health information, we could learn faster from the resulting datasets how best to treat those with this puzzling condition, which is characterized by difficulty breathing, fatigue, brain “fog,” and a wide range of debilitating problems in the heart, brain, lungs, gut, and other organs.
The data that institutions have already gathered are valuable, but they also have limitations that constrain our ability to find answers about the virus and its long-term effects. Much of the data collected in large-scale surveys are not generalizable, meaning they do not apply to the entire population of people who are affected by the virus. This is because they are often collected from convenience samples -- groups of people who are easy for researchers to get in contact with. But if institutions shared their data, registries could be formed and provide insights on trends beyond the siloed areas in which the data were originally collected.
Even though our current understanding of Long COVID is quite limited, the key to understanding it lies in the tried-and-true practice of community engagement in research. Consulting directly with patients who are experiencing, or have recovered from, Long COVID is the best way to conduct research that is truly impactful.
Grassroots and crowdsourcing efforts by patients, such as pooling their health information, could encourage more people to share their experiences with Long COVID. Such efforts would empower individuals to take control of their data and collaborate on its use. Surveys and other data collection tools could be developed to ask the right questions and maximize outcomes.
Listening to stories from Long COVID patients and uniting systems to collect and share standardized data could be an invaluable piece to solving this puzzling health condition. The best decisions regarding COVID-19 have been data-driven; decisions would be even better if the people most impacted by the virus were the ones driving the data collection.
Authors
Kristyn A. Pierce, MPH
Data Manager/Junior Research Scientist, GPH
Sharese T. Willis, PhD
Instructor, University of Memphis
Melody S. Goodman, PhD
Associate Dean for Research and Associate Professor of Biostatistics, GPH