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.
Partnering with patients and communities is a high priority for researchers, institutions and funding agencies so they can design clinical research studies in ways that optimize research participants? experiences. However, investigators often lack the tools, expertise, and technology to collect the feedback to guide and evaluate these efforts. This project combines the experience, expertise and enthusiasm of investigators and stakeholders at six Clinical Translational Science Awardee institutions to develop new infrastructure that will make it easy to collect, analyze, return, and use research participant experience data to improve research conduct, informed consent, representative enrollment, and to accelerate discoveries in human health.
