Evaluating Maternal Participation in Mobile Health Research

Background: With the advancement of digital technology, mobile health apps facilitate the routine collection of health data, constituting an invaluable asset of information to organizations (e.g. government and private). Such data is often already collected and easily accessed, raising an interest in utilizing such data for public good; however, little is known about an individual’s willingness to share this data freely for research purposes.

Objectives: (1)Evaluate the feasibility of collecting mobile health data (mHD) for research purposes (2) Utilize mHD to inform future health-related research

Methods: The Caregiver Health and Activity Monitoring Pilot Study (CHAMPS), was a 16-week study asking mothers in the Interactive Autism Network (IAN) - a community-powered research network that focuses on improving the lives of individuals with ASD and their families - to: (1) complete multiple brief online questionnaires about their own perceived physical health and well-being and (2) share their mHD (activity level) with researchers by connecting their Fitbit to a secure online platform.

Eligible IAN mothers were emailed a study invitation to join CHAMPS. Eligibility criteria included: (1) being the mother of a child or adolescent with ASD and (2) participating in a previous questionnaire that asked mothers if they owned a Fitbit. Study invitations were sent to two groups: Group A consisted of mothers that already owned a Fitbit and Group B included mothers that did not own an activity monitor. A Fitbit was purchased for the latter group. Data was collected monthly from internet-based questionnaires consisting of custom questions and standardized surveys, including 10-item PROMIS Global Health. Participants were asked about their perceived health, well-being, and Fitbit use.

Results: A total of 109 mothers joined CHAMPS. Overall, 83% (n=91) of participants completed the study; however, these rates differed by group. Group B had a significantly higher completion rate, demonstrating greater engagement (Group A=63%, Group B=98%).

At the beginning of the study period, 22 participants in Group A connected their Fitbit. Several participants contacted our research team because they no longer possessed a working Fitbit. By contrast, 100% of Group B participants connected their Fitbit to the study platform. The inability to connect the Fitbit was related to not having a functional device rather than the platform’s capability.

The final questionnaire presented participants with the opportunity to express their feelings and thoughts in an open-ended format. Group A focused on the positive aspects of contributing to research while Group B focused on their experiences using the Fitbit. The novelty of having a Fitbit, or not, seemed to influence how participants viewed their participation.

Conclusions: New Fitbit users were more engaged in CHAMPS as compared to mothers that already owned an activity monitor. The new Fitbit user group had higher study completion rates, all participants shared their Fitbit data, and feedback focused on the Fitbit itself rather than the study as a whole. Mothers of children and adolescents with ASD are willing to share mobile health data for research.