Factors influencing willingness to share personal health information for research purposes: A systematic literature review

This systematic literature review examines the factors influencing individuals’ willingness to share (WTS) their personal health information (PHI) for research purposes. Drawing on 29 studies spanning qualitative, quantitative, and mixed-methods approaches, the review synthesizes findings through the TCCM (Theories, Context, Characteristics, Methods) framework. The privacy calculus of balancing perceived benefits and risks emerges as the dominant paradigm for studying the sharing behaviour, with perceived risks and benefits along with various contextual factors, such as the data recipient, perceived control over data, transparency, and the effectiveness of privacy safeguards significantly shaping willingness to share. Personality traits such as altruism are identified as positive drivers, while privacy concerns act as barriers. Demographic influences are mixed, with age showing some effect, but gender and income are largely insignificant. The review proposes an expanded APCO (Antecedents, Privacy Concerns, Outcomes) framework tailored to PHI-sharing and highlights future research directions, including cultural influences on sharing PHI and decision-making under incomplete information.