Empowering the Participant Voice
What is the project about?
Investigators, ethics boards, research managers and coordinators are all enthusiastic about receiving research participant feedback, and participants are usually eager to provide their perspectives. Yet, common barriers to collecting feedback exist in many settings, and this feedback goes largely uncollected. Common challenges include finding the right tool, access to infrastructure for sending surveys and tracking metadata, effort (people), training, and resources to get the job done, and analysis tools and benchmarks to make sense of the data. Further, there is a broad group of other stakeholders who are interested in the collection, and sharing of such feedback, and could inform the best ways to respond to findings.
This project will create the infrastructure to streamline collecting research participant feedback and to generate the framework for benchmarking within and between institutions, to improve research.
The goal of the EPV multi-institutional project is to DEVELOP (Aim 1 for more) and share easy-to-use infrastructure that streamlines the routine collection of feedback from research participants about their experiences in clinical research, to inform the improvement of research. The project builds upon a validated RPPS participant-experience survey, and a low-cost easy-to-use platform (REDCap) already in wide use. The project is designed to overcome barriers to using the RPPS that institutions have faced previously when thinking about collecting feedback.
Through collaboration across six Clinical and Translational Science Award sites (CTSAs), the team will engage institutional, community, and patient stakeholders as they develop tools, standards, focus on how to best reach different populations and how to make results valuable to different audiences. Common standards for use of the tools and data within and across institutions, and the creation of data sharing agreements and aggregate databases will enable benchmarking and enable research toward tailoring how research is conducted to population preferences. The sits will implement a variety of use cases to DEMONSTRATE (Aim 2 for more) the utility and impact of the survey and infrastructure. After refinement, the tools will be DISSEMINATED (Aim 3 for more) widely for to enhance representativeness and impact. The resulting data will help to identify better/best practices to improve research.
Why ask participants about their research experiences?
Research participants are critical to closing the gap or “translating” a scientific discovery from the laboratory into proven practices that improve health. Clinical translational research cannot advance without research participants.
Many research studies enroll slowly or fail to ever enroll as many participants as are needed to answer a research question thereby stalling improvements to health. For reasons of convenience, some studies may primarily enroll people with access to good healthcare; this may narrow the diversity of the study group and limit the generalizability of the results. For research discoveries to help those most affected by the disease under study, studies should include individuals from all the communities affected by the condition, and especially those affected by health disparities and otherwise under-represented in research. The reasons for declining to join, joining, or leaving a research study may be complex and may differ for specific communities based on historical experiences, social or educational or other factors. Only by asking people about their experiences can we begin to tailor research to enhance those experiences.
Finally, and importantly, efforts to protect the rights, autonomy and safety of research participants result in many practices that are implemented in different ways, with little information about which way works best. Historically the adequacy of these protections has been judged by committees and institutions.
We believe that the effectiveness of practices designed on behalf of participants, should be judged, at least in part, by the experiences of the participants themselves.
Why survey research participants?
The most direct way to understand research participants’ experiences is to ask them. Many new approaches intended to improve research engagement, recruitment and conduct have been implemented, yet, depending on how their effectiveness is measured, it can be difficult to know whether they will work in other populations or settings. A validated survey provides quantitative measures that can be compared across groups, before, after, and across different approaches to decide which approaches are more effective in which populations. Asking participants about their research experiences and using tools that produce measurable and comparable outcomes, provides essential data for improving the how clinical research is conducted and tailored to different populations.
The current lack of direct valid participant experience data to support evaluation of research practices and innovations, and guide their improvement, is a critical translational gap. This project is addresses the crucial need for data to improve clinical investigation.
The project uses the latest version of the Research Participant Perception Survey-Short-P. The survey includes experience rating questions that capture the key drivers of overall research experiences, demographics and study characteristics, questions about respect, listening, courtesy, partnership, motivation to leave, stay or return to research, and more. To read more about the journey developing the tools, read a lay summary or link to research publications.
The ultimate measures of the success of the project will be the creation of the RPPS/REDCap project tools and infrastructure, outcome data from completed demonstration projects that illustrate the effectiveness of the tool to collect feedback from representative populations and identify actionable findings to spark impactful improvements. Other metrics include the uptake of the new infrastructure and approach by Consortium members and REDCap users, and their participation in both intra-institutional and Consortium-wide benchmarking. The goal is to provide value to a range of stakeholders, enabling broad use of participant feedback to improve research.