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Clinical Research Support Office/CRSO

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D. Strategies and Tools for Sharing Best Practices in Regulatory Support and Advocacy

The Rockefeller University Center for Clinical and Translational Research is committed to developing, disseminating, and adopting Best Practices in collaboration with the National CTSA Consortium Steering Committee.  We have sustained a major initiative around assessing the research participant experience in order to improve research conduct.

The value of engaging research volunteers in talking about the research process has gained increasing attention, and thereby the value of research participant-centered measures is increasingly recognized.  Starting in 2006, we sought to develop and validate participant-centered measures of the research experience, including measures such as the quality of the informed consent process, aspects of research participant's autonomy and rights, the degree of alignment between expectations and experiences during study participation, and drivers of decisions to join, leave or stay in a research study. We also wanted to understand the drivers of positive research experiences, and to demonstrate the value of using participant feedback to improve the research process. 

Through a multi-institutional collaboration, and series of studies, using focus groups and qualitative methods to develop the questions, as well as quantitative psychometric methods to test their validity, and with the input from more than 8,000 research participants we developed a suite of ultrashort, short and long versions of the Research Participant Perception Survey (RPPS). The RPPS surveys are validated, which means that the have passed tests of reliability and reproducibility in collecting the information, and the full set of questions is available in Spanish. We offer the RPPS survey to all of our research participants on a rolling basis, confidentially administered by a third party and use the results to improve our consent forms, patient flow, and provide valuable feedback to research teams.  We share the surveys freely with other institutions, numerous of which have adopted the shorter versions of the survey for local use.  Plans are afoot to develop a free electronic version with a supporting analytics dashboard to enable broader use and local and national benchmarking. 

Among the results from research participants in the largest group tested,

  1. a majority (73%) gave their research experience the highest rating,
  2. many valued a feeling of being treated as a partner in the research endeavor. 
  3. basic values, such as being treated with respect, feeling listened to, and having consent discussions conducted understandably impacted overall study rating
  4. 72% of participants would have liked to receive the results of their research study. 

When the ultrashort, short and long RPPS versions were tested together, the shorter the survey, the more people completed it, though inclusion of a financial incentive shifted the demographics of responders, and slightly lowered response reliability. 

The real value of the RPPS surveys extends beyond the results of a single assessment. The surveys give researchers the tools to empirically test  to find the best approaches to recruitment, consent, study conduct, compensation, return of results, and more from the perspective of the participants.  

Site Map Investigators Log-inD. Strategies and Tools for Sharing Best Practices in Regulatory Support and AdvocacyThe Rockefeller University Center for Clinical and Translational Research is commi