Survey results about Studyfinder released

The survey collected basic demographics of survey participants. All except one participant was aged 18 and over (range: 14 to 76, median age: 39); one minor aged between 13 and 17 provided parental consent, assent, and completed the survey. The race/ethnicity of each participant was requested, with 92.3 percent of survey participants reporting they were White, 5.1 percent were Hispanic, 0.9 percent were Black, and 5.1 percent were Asian/Pacific Islander.

Survey participants had a variety of education levels; everyone except the minor participant was at least a high school graduate, with many reporting post-secondary degrees. There was also a variety of employment levels, with 62.4 percent of participants reporting they worked full-time. Notably, 13.7 percent of participants were students.

The survey aimed to obtain feedback from people affiliated with Penn State as well as community members. Most participants claimed affiliation with Penn State, with 42.7 percent reporting that they were employed by Penn State, and 37.6 percent of participants saying they were community members not connected to Penn State. Participants or research staff reported representation from studies of all therapeutic areas. A varied range of participation frequency was represented with 22 percent of participants participating in one trial, 16 percent participating in two trials, 12 percent participating in three trials, 9 percent participating in five to 10 trials, 3 percent participating in 11 to 29 trials, and one participant who participated in 50 or more trials.

Survey results showed that 17 responders considered themselves a researcher or research staff only, 79 respondents considered themselves a study participant only, and 21 respondents considered themselves a researcher/research staff and a study participant.
Most who identified as researchers stated that they used Studyfinder to list their study.

All but one participant “agreed” or “strongly agreed” that including their study in Studyfinder was easy. Not everyone tracked how their study participants found their study, but of those that did, more than three-quarters of their study participants used Studyfinder. More than 90 percent of researchers or research staff indicated that they will continue to use Studyfinder in future study recruitment efforts.

Study participants who used Studyfinder to find studies indicated that the research team responded promptly to their inquiry. Some provided suggestions to research staff for improvement (listed under “Next Steps”). Nearly 75 percent of study participants said that they will be using Studyfinder to find trials opportunities in the future.

The Studyfinder Perceptions survey piloted a new compensation platform called Tango Card. This method allowed for quick and easy distribution of participant compensation in the form of a digital gift card to a vendor of choice. This new workflow replaced the need to collect addresses to mail physical cards or have gift cards sitting on grant accounts and provided an average turnaround compensation time of 5 hours (range: 0.11 to 97.50 hours).

Overall, this created a seamless participation-to-compensation continuum for participants by having everything electronic. Participants received this gift card in their email inbox for redemption at a retail center or to donate to a not-for-profit organization of their choice. The success of this pilot will be shared with other research teams at Penn State and throughout the Clinical and Translational Science Award (CTSA) consortium for future implementation.

The survey successfully provided valuable user insight about the Studyfinder website. This feedback will inform the next phase of Studyfinder improvements as well as future educational opportunities from the Clinical and Translational Science Institute.

In addition to the results above, survey participants were given a chance to provide their own suggestions for improvement. The recurring themes from these suggestions are:

• Update the search functionality (age ranges, compensation, location)
• Improve the study listings (easier to read, more eligibility information, add timeframes and/or goals)
• Share the survey and pilot results with the research community
• Clarify healthy volunteer opportunities
• Improve the process to edit or remove study listing in CATS IRB
• Allow each study listing to be its own webpage for sharing
• Integrate Tango Card with REDCap to automate and minimize time to compensation
• Advertise Studyfinder features broadly

The project described was supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1 TR002014. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

Recruitment for the study included/was done via ResearchMatch, a national health volunteer registry that was created by several academic institutions and supported by the U.S. National Institutes of Health as part of the Clinical Translational Science Award (CTSA) program. ResearchMatch has a large population of volunteers who have consented to be contacted by researchers about health studies for which they may be eligible. Review and approval for this study and all procedures was obtained from the Pennsylvania State University Human Subjects Protection Program.

The Pennsylvania State University version of StudyFinder is customized and supported by the Pennsylvania State University Clinical and Translational Science Institute under grant UL1TR000127. StudyFinder was developed by the University of Minnesota Clinical and Translational Science Institute and is supported by the NIH Clinical and Translational Science Award: UL1TR000114.

Study data were collected and managed using REDCap electronic data capture tools hosted at the Penn State Milton S. Hershey Medical Center and College of Medicine. REDCap (Research Electronic Data Capture)¹ is a secure, web-based application designed to support data capture for research studies, providing:

• an intuitive interface for validated data entry
• audit trails for tracking data manipulation and export procedures
• automated export procedures for seamless data downloads to common statistical packages
• procedures for importing data from external sources

¹ Paul A. Harris, Robert Taylor, Robert Thielke, Jonathon Payne, Nathaniel Gonzalez, Jose G. Conde, Research electronic data capture (REDCap) – A metadata-driven methodology and workflow process for providing translational research informatics support, J Biomed Inform. 2009 Apr; 42(2):377-81.