JMIR Publications

ABSTRACT

Background:

Health data typically include patient-generated data (PGD) and clinical medical data. Different types of data contribute to disease prevention, precision medicine, and the overall improvement of healthcare. With the introduction of regulations such as the Health Insurance Portability and Accountability Act (HIPAA), individuals play a key role in the sharing and application of personal health data.

Objective:

This study aims to explore the impact of different types of health data on users' willingness to share. Additionally, it analyzes the effect of data control and delay discounting rate on this process.

Methods:

We analyzed the results of an online survey to examine individuals' perceptions of sharing different types of health data and how data control and delay discounting rate influenced their decisions.

Results:

Our findings indicate that the type of health data does not significantly affect the perceived benefits of data sharing. Instead, it negatively influences willingness to share by indirectly affecting data acquisition costs and perceived risks. Our results also show that data control reduces the perceived risks associated with sharing, while higher delay discounting rates lead to an overestimation of data acquisition costs and perceived risks.

Conclusions:

Individuals' willingness to share data is primarily influenced by costs. To promote the acquisition and development of personal health data, stakeholders should strengthen individuals' control over their data or provide direct short-term incentives.