Biomedical Citizen Science at the National Institutes of Health

Abstract

The National Institutes of Health (NIH) is the largest funding agency for biomedical and behavioral research in the United States, supporting basic, translational, and clinical research to drive discoveries and knowledge that enhance health, lengthen life, and reduce illness and disability. The NIH invests in research that runs the gamut from basic biological mechanisms to innovative device development; environmental public health; and behavioral, implementation, and population sciences. Citizen science methodologies and approaches have broadened opportunities for public involvement across the full spectrum of biomedical research. The NIH has a long history of supporting citizen science and public-partnered research. It is challenging to estimate the investment that NIH has made in citizen science given the diverse fields, program types, and project organization that NIH-supported citizen science exemplifies and the expansion into related disciplines. The common thread through these diverse programs is a meaningful partnership with the public as direct collaborators and participants. Here, we describe unique examples of successful biomedical citizen science and community-engaged research projects that are hosted by NIH or that have received NIH support, and highlight the different terms used to encourage and report on citizen science and related methodologies.

A Citizen Science Approach to Evaluating Consumer Water Safety Concerns (2011–2022)

“…The promise and perils of citizen science are of growing interest, , especially to government agencies in the United States − and internationally. , Citizen science practitioners have a diversity of approaches and goals, − prompting discussion of best practices and appropriate rules of engagement. ,− At one extreme, citizen science is the only approach that can provide scientists the data needed to study certain problems. , At another extreme, citizen science has been designed to expose social injustice and address power differentials. − Sometimes, a project designed to collect data addressing consumer concerns evolves into a project with social justice implications, as in the case of our team’s work helping to expose the Flint Water Crisis in 2015 …”

Involving Members of the Public to Develop a Data Collection App for a Citizen Science Project on Housing Accessibility Targeting Older Adults

“…The use of an app was found to be an adequate way of collecting data despite "the participants' varying tech literacy" (King et al 2020). Supported by the National Institute of Health in the United States, the Our Voice app is used in more than 20 countries (Mintz and Couch 2022). However, it should be noted that participation among older adults in trials on digital health technology was dependent on digital skills (Poli et al 2020), and demands for high levels of tech literacy is possibly why some older adults avoid participating in citizen science initiatives.…”