Cohort seeks cardiovascular data from 1 million volunteers
More than 100,000 volunteers have consented to donate their cardiovascular data to help researchers better understand, predict and prevent heart disease.
Ultimately, the goal of the Health eHeart Study is to secure at least 1 million participants and to leverage the power of web and mobile technology to gather data through devices such as smartphone apps. Anyone age 18 and older with an active email address is eligible for the global study, and people from around the world are already participating.
Researchers at the University of California-San Francisco received a $9.75 million grant from the National Institutes of Health to develop a digital platform—called Eureka—that is both app- and web-based and whose purpose is to connect researchers with volunteers globally for the Health eHeart Study.
“We’ll invite participants to join the Eureka community, which will also include investigators and people interested in healthcare implementation,” says Gregory Marcus, MD, a UC San Francisco Health cardiologist and director of clinical research in the UCSF Division of Cardiology.
A virtual infrastructure that taps into the Internet and smartphone technology is the focus of the initiative, which Marcus contends can be easily scaled and is more cost effective. “A charge of the NIH grant is to make the platform financially sustainable,” he adds. “The goal is to create the infrastructure that lives on for decades to come.”
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The overall aim of Health eHeart is to gather more data about heart health from more people than any research study has done before. Marcus says the study is compliant with HIPAA security guidelines, and that the data is transmitted, stored and processed in a secure environment.
Mobile apps will be used to track participant activity or heart measures, such as heart rate, while sensors will measure physical factors, like ECGs, sleep, blood pressure and weight. In addition, an app will integrate with Facebook to study the impact of social networking on health, while other data gathering will include collection of DNA, visits to study sites (e.g., UCSF) to get specialized cardiovascular testing, as well as online surveys.
Among the questions the cohort is seeking to answer: Can technology be used to develop ways to improve cardiovascular health and rigorously test them to determine their effects on health? And, can mobile technology and sensors be used to keep people with heart failure out of the hospital?
Toward that end, an initial assessment by UCSF researchers shows that location-tracking apps on smartphones could be used to help monitor and manage care for thousands of patients who suffer from chronic diseases such as heart disease. The app, developed by mHealth vendor Ginger.io in collaboration with study investigators, was designed to detect known hospital visits.
“Ascertainment of hospitalizations and cardiovascular events is critical to assess disease occurrence, quality of care and the effectiveness and adverse effects of various therapies,” states a paper published last week in the American Heart Association journal Circulation: Cardiovascular Quality and Outcomes. “Smartphone-based geofencing, a location-based program that defines geographical boundaries, may allow real-time tracking of medical visits and reduce the measurement error of retrospective reporting.”
Tracking hospitalizations through smartphone-based geofencing is critical because patient recollection is unreliable and can be biased, according to Marcus. In the study, the app was found to be 65 percent accurate in identifying when someone was in a hospital and how long they stayed. The accuracy of app-detected hospitalizations was confirmed by medical record review as the reference standard.
“The accuracy was moderate,” concludes Marcus. “Under the NIH award, we are almost done building our own app, and we’re going to take many of the lessons learned from this project. We will be implementing it in future research from our own homegrown mobile app. With the app that we’re building, we have some strategies in mind to make it more accurate.”