JMIR Publications

ABSTRACT

Background:

Blockchain technology has capabilities that can transform how sensitive personal health data is safeguarded, shared, and accessed in digital health research. Women’s health data are considered especially sensitive, given privacy and safety risks associated with their unauthorized disclosure. These risks may affect research participation. Using a privacy-by-design approach, we developed two app-based women’s health research study prototypes for user evaluation and to assess how blockchain may impact participation.

Objective:

This study sought the perspectives of women to understand whether applications of blockchain technology in app-based digital research would affect their decision to participate and contribute sensitive personal health data.

Methods:

A convergent mixed methods experimental design was used to evaluate participant perceptions and attitudes towards using two app-based women’s health-focused research study prototypes with blockchain features. Prototype A was based off the status quo ResearchKit framework and had an extensive electronic informed consent, while Prototype B minimized study onboarding requirements and had no informed consent; the mechanisms of how the data women contributed flowed and were made pseudonymous were the same. User evaluations consisted of a think-aloud protocol, perception survey, and semistructured interview. Findings were mapped to the Technology Acceptance Model to guide interpretation. User evaluations were carried out in February 2021 and March 2021.

Results:

We recruited 16 representative female participants across sociodemographics and technology usage. User evaluations revealed that while participants considered Prototype B easier to use on intuitive navigation (Theme 1) of specified tasks and comprehension (Theme 2) of research procedures, Prototype A fared more favorably across most perception survey constructs. There was an overall lower level of privacy concern and perceived privacy risk, higher level of perceived privacy, trust, and usability with Prototype A compared to Prototype B; only perceived control and perceived ownership was higher in Prototype B compared to Prototype A. These constructs, except for perceived ownership and usability, were shown to be significantly correlated with behavioral intention to use the app. Participants perceived the usefulness of these prototypes in relation to the value of research study to women’s health field (Theme 3), the value of research study to self (Theme 4), and the value of blockchain features for participation (Theme 5). These 5 themes drive participants overall attitude towards use of the blockchain-enhanced women’s health-focused research study apps, which is a determinant of one’s actual decision to consistently participate and contribute data.

Conclusions:

This study provides nuanced insights into how blockchain applications in app-based research remains secondary in value to participants expectations with health research, and hence their intention to participate and contribute data. However, with impending data privacy and security concerns, it remains prudent to understand how to best apply and integrate blockchain technology in the digital health research infrastructure.