OVERVIEW: The Community Engagement (CE) group within SC CTSI has introduced Zippy, the virtual research navigator to engage children and families in clinical research, at Children's Hospital Los Angeles.
GOALS: The virtual research navigator is designed to interact with families, address concerns and misperceptions about clinical research, answer questions, and empower families and young people to be informed research participants.
CURRENT ACTIVITIES: In collaboration with USC’s Institute for Creative Technology, we developed a beta version of Zippy and supplied it with a compendium of questions and concerns that potential pediatric research participants and their families might have. Feedback from an initial pilot with adolescents/parents revealed that Zippy was engaging and informative. We are currently conducting a randomized trial with forty participants to formally evaluate Zippy's effectiveness to increase knowledge and readiness for clinical research.
Purpose of the program
The Virtual Research Navigator (VRN) Project represents a partnership with the USC Institute for Creative Technologies (ICT) and the SC CTSI. The goal of the VRN project is to improve the engagement of diverse patients and families in clinical research. This virtual navigator will help to build knowledge and address common concerns about participating in a research study. In the long term, we hope to ultimately increase family enrollment in clinical research studies.
Why the program was developed
There is a critical need to find more effective ways to engage, recruit, and retain children and other underrepresented populations in clinical research. Research on the safety and efficacy of medications, devices, and preventive health interventions has historically focused on adults. Similarly, racial/ethnic minorities and other high-disparity groups have not been sufficiently represented in clinical research. This is due to a variety of reasons such as:
- Historical lack of trust of clinical research and medical institutions
- Fear and hesitation due to misconceptions or lack of knowledge about the benefits and risks of participation
- Limited knowledge about how to identify and engage in research opportunities
How are the communities being engaged
Using interactive technologies and virtual characters, we have developed a Virtual Research Navigator (Zippy the Robot) to engage with patients and families about participating in a research study. Zippy was developed after multiple discussions with parents, adolescents and research staff to ensure the final character was acceptable and relatable to a variety of audiences. By including answers to commonly asked questions in animated videos, families can be better equipped to make an informed decision about participating in research studies.
After developing the virtual research navigator and the interactive platform — with feedback from staff, patients and caregivers — we are now testing it with parents and young people (ages 12 and up). We have been recruiting at hospital clinics, community events, and through social media. This information will be used to further develop the appearance and personality of the virtual navigator as well as its scripts and conversations.