JMIR Publications

ABSTRACT

Background:

Barriers to recruiting and retaining people with psychosis and their families in research are well-established, potentially biasing clinical research samples. Digital research tools, such as online platforms, mobile apps and text messaging, have the potential to address barriers to research by facilitating remote participation. However, there has been limited research on leveraging these technologies to engage people with psychosis and their families in research.

Objective:

The objective of this study was to assess the uptake of digital tools to engage patients with provisional psychosis and their families in research and their preferences for different research administration methods.

Methods:

This study used Research Electronic Data Capture (REDCap), a secure web-based platform with built-in tools for data collection and storage, to send web-based consent forms and surveys via text message or email to patients and families referred to early psychosis intervention services; potential participants were also approached or reminded about the study in person. We calculated completion rates and timing using remote and in-person methods and compensation preferences.

Results:

A total of 447 patients with provisional psychosis and 187 of their family members agreed to receive the web-based consent form, and approximately half of patients (48.3%; 216/447) and family members (58.3%; 109/187) consented to participate in the survey. Most patients (79.5%; 182/229) and family members (64.7%; 75/116) who completed the consent form did so remotely, with more family members (35.3%; 41/116) completing it in person than youth (20.5%; 47/229). Of those who consented, 77.3% (167/216) of patients and 72.5% (79/109) of family members completed the survey, and most did the survey remotely. Almost all patients (90.5%; 418/462) and family members (91.6%; 174/190) requested to receive the consent form and survey by email, and only 4.1% (19/462) and 3.2% (6/190) preferred text message. Just over half of patients (54.5%; 91/167) and family members (53.2%; 42/79) preferred to receive e-gift cards from a coffee shop as study compensation. Most surveys were completed during the week between 12 and 6 pm.

Conclusions:

When offered the choice, most participants with psychosis and their families chose remote administration methods, suggesting that digital tools may enhance research recruitment and participation in this population, particularly in the context of the COVID-19 global pandemic.