the Clinical Research Enterprise Collaborative Infrastructure and Validated Tools Project PI Rhonda G Kost MD 1 Empowering the Participant Voice Collaborative Infrastructure and Validated Tools for Collecting Participant Feedback to Improve the Clinical Research ID: 1043822
Download Presentation The PPT/PDF document "Real-time Participant Feedback to Improv..." is the property of its rightful owner. Permission is granted to download and print the materials on this web site for personal, non-commercial use only, and to display it on your personal computer provided you do not modify the materials and that you retain all copyright notices contained in the materials. By downloading content from our website, you accept the terms of this agreement.
1. Real-time Participant Feedback to Improve the Clinical Research Enterprise:Collaborative Infrastructure and Validated Tools Project PI: Rhonda G. Kost, MD1
2. Empowering the Participant Voice: Collaborative Infrastructure and Validated Tools for Collecting Participant Feedback to Improve the Clinical Research Enterprise is supported in part by a Collaborative Innovation Award from the National Center for Accelerating Translational Science #U01TR003206 to the Rockefeller University, and by Clinical Translational Science Awards UL1TR001866 (Rockefeller University), UL1TR002553 (Duke University), UL1TR003098 (Johns Hopkins University), UL1TR002001 (University of Rochester), UL1TR002243 (Vanderbilt University), and UL1TR001420 (Wake Forest University Health Sciences).SupportSupported in part by NIH/NCATS Grant # U01TR003206
3. Site Principal InvestigatorshAnn M. DozierRN, PhD, FAAN Professor and Chair, Department of Public Health Sciences Albert D. Kaiser Chair of Public Health and Preventive MedicineJoseph E. Andrews, Jr.PhD, MA, CIP, CCRP Assistant Dean for Regulatory Affairs and Research Integrity at Wake Forest School of Medicine. Daniel FordMD, MPHVice Dean for Clinical Investigation, Johns Hopkins School of MedicineDirector, Institute for Clinical and Translational Research Rhonda G. Kost, MDProject PI Associate Professor of Clinical InvestigationCenter for Clinical and Translational ScienceRanee Chatterjee-MontgomeryMDAssociate Professor of MedicineDuke Clinical and Translational Science Institute Paul HarrisPhDProfessor, Director of Biomedical Informatics
4. AgendaWelcome & IntroductionsProject OverviewImplementationQ&A
5. Why Survey Research Participants with RPPS?Supported in part by NIH/NCATS Grant # U01TR003206Is consent effective?Are participants having a positive experience? How to improve recruitment?How to improve retention?Are different groups of participants have different experiences?What is the experience of minorities and underrepresented groups? How effective or impactful are current engagement, recruitment, etc. initiatives?Asking participants builds trustEngaging communities in acting on results builds trustIdentify high performance/best practicesIdentify opportunities to improve researchHow do we compare to other sites? Are there common opportunities across the Consortium?
6. Supported in part by NIH/NCATS Grant # U01TR003206
7. Value PropositionWhy haven’t we all done it already?which survey?which participants?how to sample?how to send?when to send?how to analyze data?what do the scores mean?are there any benchmarks?how to use the data?
8. EPV Project AimsSpecific Aims: 1. Develop a novel Research Participant Perception Survey/REDCap (RPPS/REDCap) collaborative infrastructure, tools, and standard implementation models.Supported in part by NIH/NCATS Grant # U01TR0032062. Demonstrate that the collaborative RPPS/REDCap infrastructure and implementation model is an effective approach to collect local and national benchmarks and actionable data.3. Disseminate the infrastructure, catalyze research-on-research and transform evaluation by empowering the participant voice.
9. Supported in part by NIH/NCATS Grant # U01TR003206
10. EPV Project AimsSpecific Aims: 1. Develop a novel Research Participant Perception Survey/REDCap (RPPS/REDCap) collaborative infrastructure, tools, and standard implementation models.Supported in part by NIH/NCATS Grant # U01TR0032062. Demonstrate that the collaborative RPPS/REDCap infrastructure and implementation model is an effective approach to collect local and national benchmarks and actionable data.3. Disseminate the infrastructure, catalyze research-on-research and transform evaluation by empowering the participant voice.
11. Progress to date…Engaged stakeholders at each site throughoutDeveloped consensus on standards – what is standard, what is flexibleDeveloped local Use Cases Built tools and infrastructureRPPS – Short – P – English, Spanish, action tags for multilingual moduleData capture forms – participant and study descriptorsExternal module – multi-lingual fieldingExternal module – data piping from study project to RPPS projectExternal module – At-a-Glance Dashboard, local and national viewsImplemented InfrastructureImplemented Use Cases (different at each site)
12. RPPS-Short survey asks about…Informed consentListening/courtesy/respectFeeling valuedLanguage/culture/privacyCommunication with teamRate the Overall research experienceWould you recommend to friends and familyDemographicsSupported in part by NIH/NCATS Grant # U01TR003206
13. Supported in part by NIH/NCATS Grant # U01TR003206Consortium Dashboard View
14.
15. Supported in part by NIH/NCATS Grant # U01TR003206Implementation
16. Install or update REDCap to version 10.0 or later Create an EPV RPPS Project in REDCap Create a Research Study Database Project in REDCap (Optional)Create an Intra-Institutional Aggregator Project in REDCap (Optional)Connect your institution’s RPPS Project with the EPV Consortium Database Install REDCap external modules:EPV At-a-Glance Dashboard module 1.7 or laterMultilingual 1.9.8 or later Cross project piping 1.4.5 or later (Only if using a Research Study Database Project in REDCap)Technical Setup Checklist, RPPS/REDCap
17. Collecting Participant Descriptors
18. Collecting Study Descriptors
19. Recipients Vs. Responders
20. Summarizing EffortInstitutional Set-Up and Initial Implementation - total hours through the first fielding Effort Leadership 17-56 hoursProject Manager50-100 hours Institutional Maintenance and Program Management - hrs/weekLeadership2-3 hr/weekProject manager4-9 hr/weekTechnical Set-up Tasks - per projectLeadership0-10 hours, Initial technical set upProject manager0-19 hours Initial technical set upIT & REDCap combined 45 hours Initial technical set upOngoing Survey Administration - per fieldingLeadership1 hr/survey fieldingProject manager 0-20 hr/survey fielding (high end, when tasks overlap REDCap specialist)IT/REDCap functions combined 10-15 hr/survey fielding
21. Using the dataSupported in part by NIH/NCATS Grant # U01TR003206
22. Questions
23. Supported in part by NIH/NCATS Grants U01TR003206Data flow model: Use Cases 1 & 2Study characteristics from CTMSCTMS/EMR/OtherField through email/REDCap survey fxnParticipant contact and study information
24.
25. Where are we now?Supported in part by NIH/NCATS Grant # U01TR003206
26. Supported in part by NIH/NCATS Grant # U01TR003206