Patients' willingness to share digital health and non-health data for research: a cross-sectional study

Emily Seltzer, Jesse Goldshear, Sharath Chandra Guntuku, Dave Grande, David A Asch, Elissa V Klinger, Raina M Merchant, Emily Seltzer, Jesse Goldshear, Sharath Chandra Guntuku, Dave Grande, David A Asch, Elissa V Klinger, Raina M Merchant

Abstract

Background: Patients 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.

Methods: Patients 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.

Results: Of 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.

Conclusion: Patients 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.

Keywords: Data donation; Data privacy; Digital health; Social media; mHealth.

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Percentage of Patients Agreeing to Donate Data Now & After Death. This figure indicates the proportion of patients who agreed to donate each data type when approached in the Emergency Department, and the proportion that indicated that they would be willing to donate each data type after their death
Fig. 2
Fig. 2
Patient Views on the Health Relatedness of Data Types. This figure represents the proportion of participants who answered either “neutral” or “agree” to whether each of the indicated data types is related to health

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Source: PubMed

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