Veteran Preferences and Willingness to Share Patient-Generated Health Data

Background: Technologies, including mobile health applications (apps) and wearables, offer new potential for gathering patient-generated health data (PGHD) from patients; however, little is known about patient preferences for and willingness to collect and share PGHD with their providers and healthcare systems.

Objective: Describe how patients use their PGHD and factors important to patients when deciding whether to share PGHD with a healthcare system.

Design: Cross-sectional mailed longitudinal survey supplemented with administrative data within the Veterans Health Administration (VHA).

Subjects: National sample of Veterans who use VHA healthcare.

Main measures: Survey questions asked about demographics, willingness to use different devices to collect and share PGHD, what Veterans do with their PGHD, and factors important to Veterans when deciding whether to share PGHD with VHA. Administrative data provided information on Veteran health conditions. Multiple logistic regression models assessed factors associated with sharing PGHD with VHA.

Key results: Overall, 47% of our analytic cohort (n = 383/807) indicated that they share PGHD collected through apps or digital health devices with VHA. In adjusted logistic regression models, Veterans who believed the following factors were Very Important (versus Somewhat/Not At All Important) had higher odds of sharing PGHD with VHA: if their doctor (OR = 1.4; 95%CI, 1.0-2.0) or other healthcare team members (OR = 1.4; 95%CI, 1.0-1.9) recommended they do so; and knowing that their healthcare team would look at the data (OR = 1.4; 95%CI, 1.0-2.0) or use the information to inform their healthcare (OR = 1.5; 95%CI, 1.1-2.1).

Conclusions: Our data suggest that healthcare team members can influence patient sharing of PGHD, as can a patient's knowledge that PGHD will be used in clinical practice. Efforts to increase the number of patients who share PGHD with a healthcare system may benefit from buy-in among healthcare team members, who appear to play an influential role in patient decisions to share data.