To help fight the novel coronavirus now plaguing humanity, a new initiative by UC San Francisco physician-scientists, dubbed COVID-19 Citizen Science (CCS), will allow anyone in the world age 18 or over to become a citizen scientist advancing understanding of the disease.
The spread of coronavirus that causes COVID-19 has varied across individuals and regions, and the factors that determine how it affects individuals and populations are not well understood. A critical mass of CCS participants uploading information though the app, launched on March 26, 2020, could help data-crunching researchers gain insight into how the virus is spreading and identify ways to predict and reduce the number of new infections, according to Gregory Marcus, MD, MAS, professor in the Department of Medicine at UCSF and a co-leader of CCS.
Based around a smartphone app, information on the study can be accessed via https://eureka.app.link/covid19 (if prompted, enter the study key: covid) or by texting “COVID” to 41411.
Marcus said the researchers’ hope is for the new study to “go viral” – in a good way – with a goal to ultimately enroll more than 1 million individuals around the world.
“We are asking each participant to share the link to recruit at least five others,” Marcus said. “We want to demonstrate that the number of people signing up for this scientific study and contributing their data can increase exponentially, faster than the disease itself.” To illustrate this hoped-for exponential growth, the researchers plan to create and share a data visualization that maps enrollment in CCS in real time, which Marcus hopes will show study participation outpacing the global spread of the virus.
With widespread social distancing in place, and with quarantine and isolation for some, public health studies can be challenging, Marcus said, but all that’s needed to join CCS is the link and a smartphone to download the mobile phone-based app. Once enrolled, participants will be asked to complete an initial 10- to 15-minute survey about their health and daily habits. Follow-up questions, delivered by push notification or text message on an ongoing basis, are expected to require five to 15 minutes per week.
Participants will be also given the option of providing nearly continuous geolocation (GPS) data, and soon, additional data from Fitbit or other Bluetooth-enabled biomonitoring devices, including blood pressure, weight, blood oxygen levels, body temperature, exercise and sleep.
In the long term, the collective participation of committed individuals in CCS will help identify behaviors, influences and factors that increase or decrease the risk of infection or that affect outcomes after infection, Marcus said. The greater the number of participants, the greater the likelihood of statistically valid findings emerging from the study.
CCS springs from a project called the Health eHeart Study that Marcus launched in 2013 with Jeffrey Olgin, MD, a professor in the Department of Medicine and co-director of the Heart and Vascular Center at UCSF, and Mark Pletcher, MD, MPH, professor in the Department of Epidemiology and Biostatistics and the director of informatics and research innovation at the UCSF Clinical and Translational Science Institute.
That project harnessed online and mobile advances to collect and analyze cardiovascular information from study participants, using not only surveys, but also smartphone apps, portable blood pressure cuffs and electrocardiogram smartphone cases.
The experience gained through Health eHeart helped the UCSF team compete successfully when the National Institutes of Health sought to establish a national center for mobile health research. The result is Eureka, a mobile-app-focused health research platform that offers personnel and infrastructure, including cloud-based databases that can handle very dense data from millions of participants, to enable researchers to get studies up and running quickly.
Having already hosted 28 studies by various research teams on Eureka, the UCSF researchers decided to launch CCS on the platform. To stretch beyond cardiology-focused research they enlisted UCSF colleagues from a variety of medical and research specialties to contribute ideas about survey questions and study parameters. “We are like a company that during wartime switches from making cars to making tanks,” Marcus said.
Health eHeart already has nearly 250,000 participants, and spans more than 80 countries worldwide. They are accustomed to taking part in research, sharing personal medical information and being pinged with questions, and they all have been asked to be among the first to join the new CCS project, and to invite others.
With cell phones become essentially ubiquitous only in recent years, it is still early days for mobile health studies, Marcus said, but CCS has the potential to be the largest-ever prospective epidemiological study of infectious disease, perhaps of any disease. In prospective studies information is collected in real time, instead of relying solely on retrospective memory and other information that can be gathered about past events. In general, prospective studies are considered more likely than retrospective studies to correctly identify associations between variables and risks.
“Social distancing keeps many protected,” Marcus said, “but joining together to contribute data will help us beat this thing.”
Funding: The Eureka platform (Principal Investigators: Marcus, Pletcher, and Olgin) is supported by the National Institutes of Health and the National Institute of Biomedical Imaging and Bioengineering.
The University of California, San Francisco (UCSF) is exclusively focused on the health sciences and is dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. UCSF Health, which serves as UCSF’s primary academic medical center, includes top-ranked specialty hospitals and other clinical programs, and has affiliations throughout the Bay Area.