Session Notes: This workshop does not offer MOC-II credit.

National organizations have been leading efforts related to citizen science. In 1996, the Federal Community of Practice on Crowdsourcing and Citizen Science (CCS) was established and the National Institute of Health (NIH) established a Citizen Science Working Group compromising 80 staff across several NIH agencies to promote and engage national agencies in this movement. Since 1996 and particularly 2010, citizen science has experienced exponential growth, improving research capacity, quality of knowledge, and public understanding of science. To date, however, the benefits of citizen science have primarily been limited to the fields of biology, conservation, and ecology. An unprecedented opportunity exists to pair the growing citizen science movement with the explosive growth of health informatics. The focus of this pre-symposium is to inform, educate, and update colleagues on citizen science and the patient voice in research from an informatics perspective. Drawing on these national initiatives, this pre-symposium will provide the opportunity to have a robust dialogue about how the informatics community can innovatively engage in citizen science in ways that meaningfully address challenges of inclusivity and ethics. This pre-symposium will explore: (1) current state-of-the-science related to citizen science; (2) vulnerable and marginalized populations’ facilitators and barriers to engaging in citizen science; (3) ethical, legal and social implications; (4) vision of citizen science and informatics. Participants will gain an understanding of citizen science from the four areas described and how this work is being implemented across institutions. The goal of this pre-symposium is to educate and engage participants’ in a deeper discussion with fellow colleagues to create a vision and strategy for citizen science within informatics.

Learning Objective 1: Gain an overview of the current state of citizen science and participatory health

Learning Objective 2: Explore how informatics as a profession can participate and provide service for citizen science


Robin Austin (Presenter)
University of Minnesota

Pei-Yun Hsueh, IBM Watson
Rupa Valdez, University of Virgina
Anthony Solomonides, NorthShore University HealthSystem Research Institute
Arlene Chung, UNC School of Medicine
Uba Backonja (Presenter)
University of Washington Tacoma

Presentation Materials: