Public views regarding the responsibility of patients, clinicians, and institutions to participate in research in the United States

Background: The need for more and better evidence to inform clinical decision making among all stakeholders has fueled calls for creating learning healthcare systems. The successful realization of a learning healthcare system seems to assume that various parties have a responsibility to participate in learning activities, including research. The objective of this study was to determine whether members of the general public perceive an ethical responsibility to participate in pragmatic clinical research that would be inherent to a learning health system. Methods: A total of 2994 English-speaking adults completed a nationally representative online survey. Results: About two-thirds of respondents were relatively neutral regarding a responsibility for themselves and others to participate in research; the remainder felt that they and others did not have a responsibility to participate in research. Conclusions: Efforts to justify and develop a robust learning health system in an ethically acceptable fashion need to take these findings into account.