The Bellwether Collaborative
for Health Justice
Participant Retention in
Maintaining contact with marginalized communities is challenging, given frequent changes to contact information, competing priorities (e.g., secure housing), and historical mistrust of research institutions. This is especially true of individuals with lived experience in the criminal-legal system. In a recent article, members of the Bellwether Collaborative for Health Justice share insights into conducting community-based research with systems-impacted individuals. Their findings provide researchers and practitioners with strategies and resources to retain study participants–critical to achieving health equity.
The Study of Personal Experiences Accessing Care in the South (SPECS) Study is a 5-year, longitudinal cohort study with sites in North Carolina (Duke University and the University of North Carolina at Chapel Hill, Kentucky (the University of Kentucky), and Florida (University of Miami).
The overall aim of the project is to assess the acceptability, utilization, and barriers/facilitators of preventative healthcare treatment for individuals with recent criminal justice experience. Adequate inclusion of participants with this history is complicated by the collateral consequences of incarceration.
In the recently published article, Retention strategies among those on community supervision in the South: Lessons learned during the COVID-19 pandemic, the authors describe activities designed to retain participants in a cohort study for 18 months. Retention strategies are important to ensure that the study produces accurate and useful results that can be applied to all members of the population. The study analyzed the differences between those who were retained and those who were lost to follow-up based on demographic characteristics to help guide future research.
The researchers implemented best practices for retention strategies, such as multiple forms of locator information and training staff on rapport building.
During the COVID-19 Pandemic, the researchers implemented new retention strategies, including:
The study team added locator form check-ins and paid participants $5 for contacting study staff to update their locator information or to confirm there were no changes.
Locator Payment Updates
The study team added a $15 incentive for a participant’s contact (e.g., uncle or aunt) if the contact successfully connected study staff to the participant and the participant completed the study visit.
The study team developed new retention scripts to introduce virtual visits and gained the ability to message participants via text message and social media.
The study team added a paid $5 “on-time bonus” for participants who completed a data collection visit within one week of their scheduled visit.
Social Media and Texting
Overall, 227 participants were enrolled in the study, and 92.3% (180/195) were retained, with most participant characteristics not differing between retention status. However, a higher proportion of participants experiencing unstable housing were lost to follow-up.
The study's findings suggest that with flexible retention strategies, high retention is achievable, even during a pandemic. In addition to best practices for retention, the researchers suggest that other studies consider retention strategies that go beyond the study participant, such as paying participant contacts, and incentivizing on-time study visit completion.