Participant Evaluation of Blockchain-Enhanced Women's Health Research Apps: Mixed Methods Experimental Study

Abstract

Background: Blockchain technology has capabilities that can transform how sensitive personal health data are safeguarded, shared, and accessed in digital health research. Women's health data are considered especially sensitive, given the privacy and safety risks associated with their unauthorized disclosure. These risks may affect research participation. Using a privacy-by-design approach, we developed 2 app-based women's health research study prototypes for user evaluation and assessed how blockchain may impact participation.

Objective: This study aims to seek 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 toward using 2 app-based women's health research study prototypes with blockchain features. Prototype A was based on the status quo ResearchKit framework and had extensive electronic informed consent, while prototype B minimized study onboarding requirements and had no informed consent; the mechanisms of how the contributed data flowed and were made pseudonymous were the same. User evaluations were carried out in February and March 2021 and consisted of a think-aloud protocol, a perception survey, and a semistructured interview. Findings were mapped to the technology acceptance model to guide interpretation.

Results: We recruited 16 representative female participants from 175 respondents. 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 trended toward being perceived more favorably than prototype B across most perception survey constructs, with an overall lower level of privacy concern (mean [SD]: 2.22 [1.10] vs 2.95 [1.29]) and perceived privacy risk (2.92 [1.46] vs 3.64 [1.73]) and higher level of perceived privacy (5.21 [1.26] vs 4.79 [1.47]), trust (5.46 [1.19] vs 4.76 [1.27]), and usability (67.81 [21.77] vs 64.84 [23.69]). Prototype B was perceived more favorably than prototype A with perceived control (4.92 [1.32] vs 4.89 [1.29]) and perceived ownership (5.18 [0.59] vs 5.01 [0.96]). These constructs, except for perceived ownership, were significantly correlated with behavioral intention to use the app (P<.05). 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).

Conclusions: This study provides nuanced insights into how blockchain applications in app-based research remain secondary in value to participants' expectations of 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 integrate blockchain technology in digital health research infrastructure.

Keywords: bioethics; blockchain technology; data control; data ownership; data sharing; digital health study; mHealth; mobile health; privacy; reproductive health; research participation; trust; user experience; user-centered design; women’s health.

Figure 1

Summary of the convergent, mixed methods, experimental design.

Figure 2

Integrated conceptual framework with qualitative and quantitative findings mapped to technology acceptance model constructs.