The use of Technology in Participant Tracking and Study Retention: Lessons Learned from a Clinical Trials Network Study

Abstract

Background The growing use of newer communication and internet technologies, even among low income and transient populations, require research staff to update their outreach strategies to ensure high follow-up and participant retention rates. This paper presents the views of research assistants on the use of cell phones and the internet to track participants in a multi-site randomized trial of substance use disorder treatment. Methods Pre-interview questionnaires exploring tracking and other study-related activities were collected from 21 research staff across the 10 participating US sites. Data were then used to construct a semi-structured interview guide which, in turn, was used to interview 12 of the same staff members. The questionnaires and interview data were entered in Atlas.ti and analyzed for emergent themes related to the use of technology for participant tracking purposes. Results Study staff reported that most participants had cell phones, despite having unstable physical addresses and landlines. The incoming call feature of most cell phones was useful for participants and research staff alike, and texting proved to have additional benefits. However, reliance on participants’ cell phones also proved problematic. Even homeless participants were found to have access to the internet through public libraries and could respond to study staff e-mails. Some study sites opened generic social media accounts, through which study staff sent private messages to participants. However, the Institutional Review Board (IRB) approval process for tracking participants using social media at some sites was prohibitively lengthy. Internet searches through Google, national paid databases, obituaries, and judiciary websites were also helpful tools. Conclusions Research staff perceive that cell phones, internet searches, and social networking sites were effective tools to achieve high follow-up rates in drug abuse research. Studies should incorporate cell phone, texting, and social network website information on locator forms; obtain IRB approval for contacting participants using social networking websites; and include web searches, texting, and the use of social media in staff training as standard operating procedures.

Health Technology-Enabled Interventions for Adherence Support and Retention in Care Among US HIV-Infected Adolescents and Young Adults: An Integrative Review

“…However, a range of limitations to technological interventions include: power; cell phone plans (bandwidth, minutes, expense); maintenance and effort engaging with service providers; durability/functionality due to breakage/screen; and loss, theft, or confiscation [71]. Some of these limitations may be more prominent among sample populations in HIV-in-fected adolescents and young adults.…”

Retaining participants in community-based health research: a case example on standardized planning and reporting

“…BCHCP participants were aged 14-24 years and used cellular phone texting as their main mode of contact with the study team. Texting was therefore a central mode of contact [55]. Passive refusal (i.e., no response to different modes and frequency of contact) was anticipated and field interviewers were encouraged to persist in a respectful manner, offering flexibility around interview scheduling-which has been shown to be important with populations such as the BCHCP's participants [27,36,52,56,57].…”

Clinical Research Informatics: Supporting the Research Study Lifecycle

“…There are numerous complexities in the workflow of clinical studies, especially with regard to online environments, such as secondary use of electronic health records, social networks, and patient-led research studies [55,56]. Technologies such as smart phones and the Internet are also providing new opportunities for conducting clinical research which includes tracking patients, assessing compliance, and delivering interventions [57][58][59][60].…”