“Not Sure Sharing Does Anything Extra for Me”: Understanding How People with Cardiovascular Disease Conceptualize Sharing Personal Health Data with Peers

As people deal with cardiovascular disease (CVD), they are to self-monitor routinely and be aware of complications and the corresponding course of action. Engaging in these self-care behaviors is conducive to gaining knowledge of health status. Even so, knowledge of the self may be insufficient in making sense of chronic conditions. In constructing a new normal after health-related life disruptions, people often turn to peers (others facing similar health issues) and share personal health information with each other. Although health information-sharing behavior is well-documented, it remains underexplored what attitudes individuals with chronic conditions, such as CVD, have toward disclosing personal health data to peers and exploring those of others with similar conditions. We surveyed 39 people who reported being diagnosed with CVD to understand how they conceptualize sharing personal health data with their peers. By analyzing qualitative survey data thematically, we found that respondents expressed themselves as uncertain about the benefits of interacting with peers in such a manner. At the same time, they recognized an opportunity to learn new ideas to enhance CVD self-care in mutual data sharing. We also report participants’ analytical orientation toward this sort of data sharing herein and elaborate on what sharing a range of personal health data could mean. In light of the existing literature, this study unpacks the notion of sharing in a different population/pathology and with more nuance, particularly by distinguishing between disclosing one’s data and exploring others’.