Description
Citizen science refers to the collection and analysis of data by various population groups in real-world settings as part of a collaboration with scientists. Citizen science aims to respect and facilitate contributions from community members to scientific inquiry, build capacity, facilitate community-driven questions and promote dissemination. The advancement of wearable and passive monitoring technologies and direct-to-consumer genetic test kits and the continued diffusion of social media have led to an increase in citizen science projects in health care. Informatics tools introduce opportunities for large cohort research studies to understand disease and drug response and the role of environmental parameters. Vulnerable populations, namely communities with limited access to resources or at a higher risk to experience discrimination, are less likely to engage in citizen science. Informatics tools can address some of the challenges that vulnerable populations experience in engaging in citizen science. This panel will provide examples from ongoing research studies demonstrating the potential for informatics to target access barriers. We will discuss innovative approaches to participant recruitment, data collection, participant engagement and communication platforms. Case studies include participants from diverse groups (across the life-span, in urban and rural settings, within the US and abroad).
Learning Objective: After participating in this session, the learner should be better able to:
-Formulate strategies to utilize informatics tools to recruit and engage members of vulnerable populations in health-related citizen science projects
-Identify ethical and practical challenges in engaging patients and families in citizen science projects
-Develop a framework for the collection and integration of research related patient generated health data outside of clinical settings
Authors:
George Demiris (Presenter)
University of Pennsylvania
Anne Turner (Presenter)
University of Washington
Sarah Iribarren (Presenter)
University of Washington
Katherine Sward (Presenter)
University of Utah
Presentation Materials: