Participant Contributions to Person-Generated Health Data Research Using Mobile Devices: Scoping Review

Mobile devices offer an emerging opportunity for research participants to contribute person-generated health data (PGHD). There is little guidance, however, on how to best report findings from studies leveraging those data. Thus, there is a need to characterize current reporting practices so as to better understand the potential implications for producing reproducible results.

The primary objective of this scoping review was to characterize publications' reporting practices for research that collects PGHD using mobile devices.

We comprehensively searched PubMed and screened the results. Qualifying publications were classified according to 6 dimensions-1 covering key bibliographic details (for all articles) and 5 covering reporting criteria considered necessary for reproducible and responsible research (ie, "participant," "data," "device," "study," and "ethics," for original research). For each of the 5 reporting dimensions, we also assessed reporting completeness.

Out of 3602 publications screened, 100 were included in this review. We observed a rapid increase in all publications from 2016 to 2021, with the largest contribution from US authors, with 1 exception, review articles. Few original research publications used crowdsourcing platforms (7%, 3/45). Among the original research publications that reported device ownership, most (75%, 21/28) reported using participant-owned devices for data collection (ie, a Bring-Your-Own-Device [BYOD] strategy). A significant deficiency in reporting completeness was observed for the "data" and "ethics" dimensions (5 reporting factors were missing in over half of the research publications). Reporting completeness for data ownership and participants' access to data after contribution worsened over time.

Our work depicts the reporting practices in publications about research involving PGHD from mobile devices. We found that very few papers reported crowdsourcing platforms for data collection. BYOD strategies are increasingly popular; this creates an opportunity for improved mechanisms to transfer data from device owners to researchers on crowdsourcing platforms. Given substantial reporting deficiencies, we recommend reaching a consensus on best practices for research collecting PGHD from mobile devices. Drawing from the 5 reporting dimensions in this scoping review, we share our recommendations and justifications for 9 items. These items require improved reporting to enhance data representativeness and quality and empower participants.