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Consent Processes for Mobile App Mediated Research: Systematic Review.

Sarah Moore¹, Anne-Marie Tassé², Adrian Thorogood³

¹Sage Bionetworks, Seattle, WA, United States.

JMIR Mhealth and Uhealth

|September 1, 2017

Summary

This summary is machine-generated.

Mobile app-based research studies are increasingly common, but consent processes vary. This review highlights the need for clear participant informedness in remote consent for mobile health research.

Keywords:

mHealth, informed consent, smartphone, cell phone, mobile applications, privacy, research ethics

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Area of Science:

Digital Health
Mobile Health Research
Informed Consent

Background:

ResearchKit and ResearchStack frameworks enable diverse app-based studies.
Studies span various medical areas (melanoma, cardiomyopathy, autism) and populations (children, pregnant women).
The rise of mobile health necessitates examining remote consent procedures.

Purpose of the Study:

To document and analyze self-administered remote informed consent processes in app-based research.
To understand variations in information sharing, data privacy, aggregation, and sharing within these processes.
To identify novel elements in electronic consent (eConsent) compared to traditional methods.

Main Methods:

Review of app-based research studies from May to September 2016.
Examination of information provision and content, focusing on data privacy and sharing.
Analysis of both the process and specific content of remote informed consent.

Main Results:

Some consistency observed in app-based consent, particularly regarding data curation from phones.
Significant variations identified in the specificity and detail of shared information.
Novel elements in eConsent were noted, differing from traditional research consent.

Conclusions:

Participant informedness is crucial in the evolving landscape of mobile health research.
The need for clear guidelines and standards in remote consent processes is emphasized.
Further research is needed to ensure ethical and effective participant engagement in digital health studies.