Abstract
BackgroundPatients generate large amounts of digital data through devices, social media applications, and other online activities. Little is known about patients’ perception of the data they generate online and its relatedness to health, their willingness to share data for research, and their preferences regarding data use.MethodsPatients at an academic urban emergency department were asked if they would donate any of 19 different types of data to health researchers and were asked about their views on data types’ health relatedness. Factor analysis was used to identify the structure in patients’ perceptions of willingness to share different digital data, and their health relatedness.ResultsOf 595 patients approached 206 agreed to participate, of whom 104 agreed to share at least one types of digital data immediately, and 78% agreed to donate at least one data type after death. EMR, wearable, and Google search histories (80%) had the highest percentage of reported health relatedness. 72% participants wanted to know the results of any analysis of their shared data, and half wanted their healthcare provider to know.ConclusionPatients in this study were willing to share a considerable amount of personal digital data with health researchers. They also recognize that digital data from many sources reveal information about their health. This study opens up a discussion around reconsidering US privacy protections for health information to reflect current opinions and to include their relatedness to health.
Highlights
Patients generate large amounts of digital data through devices, social media applications, and other online activities
We asked participants about 19 different types of digital data: Facebook, Twitter, Snapchat, Instagram, Electronic Medical Records (EMR), genetic data, prescription history, fitness trackers, credit card purchases, tax records, online purchase history, Google searches, music streaming, Yelp reviews, rideshare history, Global Position System (GPS) data, email and text message data. These data types were chosen based on a larger project that the Center for Digital Health is conducting
A non-trivial percentage of patients recognized that digital footprints left in nonhealth areas such as finance or commerce may reveal information about their health
Summary
Patients generate large amounts of digital data through devices, social media applications, and other online activities. Health is revealed in a Seltzer et al BMC Medical Informatics and Decision Making (2019) 19:157 wide range of individual behaviors that occur outside the health care system—in purchases, communications, searches, locations—and an increasing share of those activities are captured electronically where they can be linked and analyzed. These data offer promise to advance research on individual or public health – for instance in uncovering insights on manifestations and sequelae of mental health, hospital encounters, and outbreaks [4]. The promise of applying disparate digital data to health insights sits alongside enormous practical uncertainties about logistics, acceptability, perceived and actual value
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