Summary/Abstract
Partnering with research participants in order to understand and improve their experiences in research
participation is a high priority for research investigators, institutions and their federal sponsors. However,
researchers often lack the tools, expertise, and technology to easily collect the participant feedback
needed to tailor studies in participant-responsive ways. A short, high quality validated tool for collecting
participant experience data is already available, and increasingly investigators want to use it. The
Research Participant Perception Survey (RPPS) was developed with the input of many participants and
other stakeholders. Tested in thousands of research participants, the RPPS contains a highly reliable
set of actionable measures of the research experience, including communication, consent, trust, and
others. The goal of this project is to create innovative collaborative infrastructure to make the survey
easy for any investigator or institution to use. This innovative project will form a collaboration effort
among six Clinical Translational Science Awardee (CTSA) institutions and other stakeholders, who will
combine their strengths to develop new streamlined infrastructure to enable routine collection of
research participants’ feedback about their research experiences. The collaborators and stakeholders
will develop a framework including a common set of standards to make sure the result data are
comparable across institutions, recommendations for use cases to illustrate how the data can be
valuable, and for returning results to stakeholders, user guides, and the tools to visualize the results on
a dashboard and to conduct key analyses. Each collaborating site will survey participants in one or more
ways and share feedback to refine the infrastructure and to showcase their examples of how participant
feedback can be used to evaluate and improve research practices. The new infrastructure will be shared
widely with the CTSAs and other REDCap users through the REDCap Shared Library, where all the
components can be downloaded without charge. The infrastructure and results of use cases will be
disseminated through presentations and publications. The new infrastructure will be highly sustainable,
as REDCap is used by all CTSAs and over 3500 institutions worldwide. The ability to share survey data
confidentially will allow the creation of benchmarks for comparison of practices within and across
institutions. A learning collaborative of users of the RPPS surveys, infrastructure, and benchmarks, will
make it possible to leverage the power of data across networks to identify priorities for improving
research and collaborate on testing innovations for impact. The ability to readily collect the data needed
to tailor practices in participant- and community-responsive ways, has the potential to improve the
research participant experience, improve the consent process, improve representative recruitment, and
accelerate study completion, to advance discoveries in human health.
