April 18, 2023 – A brand new nationwide research project goals to reply open questions on Long COVID and use mobile monitoring devices to observe the disease.
The government-funded RECOVER initiative goals to distribute 10,000 sensors to individuals with Long COVID to gather data in real time.
The hope is that researchers can provide doctors and patients with a wealth of knowledge to fill gaps in knowledge about Long COVID.
The project leverages the approach of other researchers to gather patient health data on heart rate, physical activity and more using mobile monitoring devices similar to Fitbits, smartwatches and other distant sensors.
The researchers consider the initiative might be particularly useful for individuals with long COVID – whose symptoms come and go. They can use a wristband sensor to passively collect data in real time.
For a disease defined by its symptoms, such data would likely be useful, experts say.
But not everyone has enough money for a smartwatch or fitness tracker. Until recently, most clinical trials were conducted using personal devices. At a time when researchers wish to make sure that clinical trials reflect the range of the population, many persons are ignored.
So researchers are starting to supply volunteers with their very own monitors. The RECOVER initiative plans to distribute 10,000 sensors to individuals who qualify based on their race/ethnicity, income, and other demographic aspects (e.g., rural residents). After two months, all RECOVER study participants over the age of 13 shall be eligible to receive the sensors.
The federal program builds on previous research at places just like the Scripps Institute, a research center for remote monitoring. The institute provided 7,000 monitors to people in a single arm of the All of Us study, a five-year, multi-site cohort that goals to gather medical data from a million people.
The devices went to individuals who have previously been underrepresented in biomedical research, said Scripps researchers, who plan to present away much more devices this 12 months.
Last month, Vanderbilt University Researchers published a study to the tracking data, which found a major decline in physical activity after COVID-19. However, the information is incomplete because many individuals cannot at all times afford these devices. Most people within the study were “white, young and active,” they wrote.
Researchers at an “All of Us” site at Vanderbilt University, which also used a Bring Your Own Device approach, found that led to distorted results. They reported their results on the Pacific Symposium on Biocomputing in January.
“[The] The majority of participants who provided Fitbit data reported being white and employed in wage labor,” they said. “However, these data represent participants who had their own Fitbit devices and consented to EHR sharing [electronic health record] Data.”
Their solution: The program has begun providing Fitbit devices to all study participants who don't own or cannot afford one.
The All of Us study website now encourages visitors to “learn about the All of Us WEAR study. You could get a free Fitbit! … As part of the WEAR study, you could get a new Fitbit to wear for free.” We all will have the ability to access the information collected by Fitbit. This data may help us understand how behavior affects health.”
Jennifer Radin, PhD, epidemiologist at the Scripps Research Translational Institute, leads the DETECT studya remote monitoring research project involving over 40,000 people with their own sensors, be it a smartwatch or a Fitbit. She was already working on remote disease monitoring before COVID came along.
Radin said she began researching remote sensing after working in public health and grappling with outdated data collection systems.
“They typically depend on case reports which might be recorded with pen and paper and sent in by fax or mail,” she said. “Then they must be entered right into a database.”
DETECT collects data on resting heart rate, which is exclusive to everybody, and activity level. Both measurements are essential for individuals with Long COVID. In her research, she found that there are differences in sleep, heart rate and activity between people with and without COVID.
She said that data collection not only provides objective data on a person's response to infection, but can also be long-term and continuous.
Joseph Kvedar is a researcher at Harvard Medical School and editor of NPJ Digital Medicine. He studies digital health systems and called clinical research a “bridgehead” for using data from monitors. But he said there are still problems that should be solved. The quality of the devices and their Bluetooth connections is improving. But different devices measure various things, and a counted step can vary from individual to individual, he said. And the issues from the early days of electronic health records haven't been fully resolved.
“We have not yet developed a universal language to connect all these things and give them meaning,” he said.
The All of Us researchers are collaborating with the RECOVER project to deal with a few of these issues. Rather than typically specializing in a single disease, the All of Us researchers are testing a machine learning approach to discover Long COVID.