Sharing clinical trial data can provide value to research participants and communities by accelerating the development of new knowledge and therapies as investigators merge data sets to conduct new analyses, reproduce published findings to raise standards for original research, and learn from the work of others to generate new research questions. Nonprofit funders, including disease advocacy and patient-focused organizations, play a pivotal role in the promotion and implementation of data sharing policies. Funders are uniquely positioned to promote and support a culture of data sharing by serving as trusted liaisons between potential research participants and investigators who wish to access these participants' networks for clinical trial recruitment. In short, nonprofit funders can drive policies and influence research culture. The purpose of this paper is to detail a set of aspirational goals and forward thinking, collaborative data sharing solutions for nonprofit funders to fold into existing funding policies. The goals of this paper convey the complexity of the opportunities and challenges facing nonprofit funders and the appropriate prioritization of data sharing within their organizations and may serve as a starting point for a data sharing toolkit for nonprofit funders of clinical trials to provide the clarity of mission and mechanisms to enforce the data sharing practices their communities already expect are happening.
Keywords: biomedical research; clinical trial; data sharing; patients.
©Timothy Coetzee, Mad Price Ball, Marc Boutin, Abby Bronson, David T Dexter, Rebecca A English, Patricia Furlong, Andrew D Goodman, Cynthia Grossman, Adrian F Hernandez, Jennifer E Hinners, Lynn Hudson, Annie Kennedy, Mary Jane Marchisotto, Elizabeth Myers, W Benjamin Nowell, Brian A Nosek, Todd Sherer, Carolyn Shore, Ida Sim, Luba Smolensky, Christopher Williams, Julie Wood, Sharon F Terry, Lynn Matrisian. Originally published in Journal of Participatory Medicine (http://jopm.jmir.org), 29.03.2021.