Factors Associated With Willingness to Share Health Information: Rapid Review

Area of Science:

• Health Informatics
• Public Health
• Data Science

Background:

• Comprehensive, real-time health data are essential for disease prevention research.
• Diverse data sources (genomics, wearables, internet activity) are increasingly integrated with personal information.
• Patient control over health information flow necessitates understanding factors influencing sharing willingness.

Purpose of the Study:

• Identify peer-reviewed literature on factors associated with health information sharing.
• Organize identified factors into cohesive themes.
• Present a narrative synthesis of factors influencing willingness to share health information.

Main Methods:

• Rapid review methodology applied to eHealth literature.
• Searched MEDLINE and Google Scholar for terms related to electronic health records and data sharing.
• Thematic analysis of 26 articles (US/Canadian adults) to identify and code factors influencing sharing.

Main Results:

• 26 research articles met inclusion criteria for qualitative analysis.
• Inductive thematic coding revealed multiple major themes influencing health information sharing.
• Key themes highlight the multifactorial nature of sharing preferences.

Conclusions:

• Patient viewpoints and complex factors significantly shape health information sharing decisions.
• Trust at multiple levels is critical for establishing effective health information exchange partnerships.
• Addressing identified factors can enhance individual sharing capacity and reorient research methods to mitigate sharing hesitation for precision health care.