E-Consent for Data Privacy: Consent Management for Mobile Health Technologies in Public Health Surveys and Disease Surveillance

摘要

Community health workers in primary care programs increasingly use Mobile Health Data Collection Systems (MDCSs) to report their activities and conduct health surveys, replacing paper-based approaches. The mHealth systems are inherently privacy invasive, thus informing individuals and obtaining their consent is important to protect their rights to privacy. In this paper, we introduce an e-Consent tool tailored for MDCSs. It is developed based on the requirement analysis of consent management for data privacy and built upon the solutions of Participant-Centered Consent toolkit and Consent Receipt specification. The e-Consent solution has been evaluated in a usability study. The study results show that the design is useful for informing individuals on the nature of data processing, allowing them to make informed decisions.