Bridging Gaps: Making the NIH All of Us Research Program More Accessible for Participants

Posted on February 7, 2024 by Rachele Peterson

This entry is part 7 of 16 in the series Mar 2024

Explore how the National Institutes of Health (NIH) All of Us Research Program successfully implemented Computer Assisted Telephone Interviewing (CATI) as a complement to web-based surveys, bridging the digital divide to engage diverse participants, amidst the COVID-19 pandemic.

The National Institutes of Health (NIH) All of Us Research Program was designed as a digital-first initiative, built to be accessible to anyone, anywhere across the United States, with in-person support at our partner locations. However, the onset of the pandemic altered the landscape, turning daily life into a tapestry of isolation. The challenge presented was not just collecting scientific data, but ensuring ongoing motivation and encouragement for participants, especially those from underrepresented communities facing new and unprecedented technology barriers. “Rethinking Data Collection Methods During the Pandemic: Development and Implementation of CATI for the All of Us Research Program” describes how we connected with participants in a new way during a time when the world was changing rapidly.

Read the article in JPHMP

In the context of a global pandemic, the challenges were multifaceted. Reaching in-person participants for ongoing data collection became a significant challenge as we closed all sites due to newly instated in-person restrictions and to heighten safety protocols. Further, the pandemic shifted priorities, making participation in biomedical research less immediate for many.

In response to these evolving circumstances, we turned to a well-established stalwart technology – computer assisted telephone interviews (CATI) which is a structured system of remote data collection via telephone. The implementation of CATI served as a strategic response, demonstrating its success in overcoming barriers and ensuring the continuation of important research endeavors in a diverse, longitudinal cohort.

As described in this month’s article, integrating CATI into the All of Us Research Program resulted in the use of a now vital tool in connecting staff with participants for ongoing data collection. The surprise came not just from its seamless integration but from the smooth training process, positive participant feedback, and the program’s success in gathering diverse data during challenging times.

CATI was embedded into the existing infrastructure of the program and its online study management platform, providing daily aggregate information on the use of CATI across the program and at individual enrollment sites. Between January 2021 and January 2022, 58 sites enrolling participants agreed to join the pilot and trained 780 staff members. The program captured sociodemographic characteristics of participants, survey completion rates, and CATI session duration. Throughout the pilot, 39 healthcare provider organizations (HPOs) facilitated 9,399 participants and submitted 16,337 surveys over the course of 1 year. These impressive figures demonstrate the widespread adoption and success of CATI in engaging participants for remote survey completion.

In general, the median CATI survey completion time was longer than surveys completed over the web as expected. Short, ‘minute’ surveys, however, exhibited a similar median duration when comparing CATI (1.9 minutes) and the web (2.15 minutes). These results highlight the efficiency of CATI, especially for shorter surveys.

CATI, as observed through the lens of All of Us, supports both “self-service” and “supported service” engagement models. Unlike a one-size-fits-all approach, CATI tailors itself to participants’ needs, creating more avenues for those who prefer self-driven experiences and/or those requiring additional support, effectively bridging the digital divide in digital-first research.

This dual-model approach represents a major shift in our key strategy for inclusion and long-term retention in All of Us. It opens doors for underrepresented communities who might otherwise be excluded due to limited access to digital tools. A digital health solution that integrates CATI becomes a beacon for inclusivity in research experiences. Multi-modal survey administration bridges the gap between moving forward in innovative technology without leaving target and diverse populations behind.

In the realm of health research, technology often serves as a means to an end—facilitating data collection, streamlining processes, and enhancing efficiency. However, the CATI experience within the All of Us Research Program goes beyond the utilitarian role of technology. It became a symbol of connection and empathy during a time when isolation altered daily life. As COVID-19 impacted daily lives and fundamentally shifted the public’s trust in government and research, a caring voice over the phone became more than a method of data collection; it became a bridge to connect researchers and participants.

In the simplicity of a phone call, the program not only gathered invaluable data through the CATI pilot but also fostered a sense of community, ensuring that each participant’s journey remained both scientific and connected to others. “Rethinking Data Collection Methods During the Pandemic: Development and Implementation of CATI for the All of Us Research Program” portrays the implementation and importance of CATI in research programs and that it will remain a mode of survey administration in this program moving forward.

Acknowledgements

I would like to express my appreciation to all of the co-authors who supported this manuscript and to our dedicated staff and enthusiastic participants. With your commitment, together we are improving the participant journey for the All of Us Research Program.

About the Author

Rachele Peterson: Rachele Peterson is chief of staff for the NIH All of Us Research Program. She is a certified clinical research professional and research administrator with nearly 20 years of research and management experience in the private sector, academia, and health systems.