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Learning from your recruitment and retention data. Ann Dozier, RN, PhD Associate Professor Community and Preventive Medicine CTSI - Community Engagement University of Rochester Medical Center. Conflict of Interest. None UR CTSI role Evaluation Community Engagement
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Learning from your recruitment and retention data Ann Dozier, RN, PhD Associate Professor Community and Preventive Medicine CTSI - Community Engagement University of Rochester Medical Center
Conflict of Interest • None • UR CTSI role • Evaluation • Community Engagement • Recruitment and retention
Recruitment Challenges • Not meeting overall recruitment target • Not meeting sub-group targets • Not meeting retention targets • …… How do we….figure out the problem? First…..look to the data
Using Recruitment Data -- Why Not? • Recruitment and retention not viewed as a science • Recruitment data are monitored but not analyzed • Not viewed as a problem to be solved with data • No data, missing data or data collected not useful, usable
Missed Opportunities • Improve current study • Sources, yields and costs of various recruitment channels or sites • Retention rates based on recruitment channels • Effectiveness of individual recruit staff • Where in process are eligible/actual subjects lost • Why do potential subjects drop out or refuse • Accrual timeline
Missed Opportunities • Informs future studies • Feasibility assessment • Determine best approach, sites • Estimate adequate time and resources • Provide rationale/assumptions for budget • Provide basis for protocol adjustment to reduce refusal/dropout rates
Potentially Eligible Identified as Potentially Eligible Referred to Study (self, provider, other) Screening Eligibility Confirmed Agrees to Participate Consents Starts Study Continues Study Completes Study
Data Collection Plan data collection to answer … • where in the pipeline you are or are not having success • what is the pattern from different sites • what is the pattern across enrollers • is there a pattern across different days or time periods • is recruitment or retention the same for different sub-groups • ……
Time and Cost Tracking • Staff costs • Time • site and offsite • preparation and travel • Other expenses • Participant and/or site incentives
Example Goal • Recruit 800 post partum WIC mothers • prenatally intended to BF • singleton infant <12 months old • prenatal care at one of two large clinics • delivered at one of two area hospitals • birth >37 weeks; no NICU • Feasibility assessment indicated we could achieve recruitment in <6 months
Lessons Learned • Test/review feasibility assumptions • Apply lessons from prior studies • Prospectively establish a plan • what data to collect • Include qualitative – e.g. why refused • protocol and tools • what analyses to conduct and when • Avoid assumptions about the problem and potential solutions
Engaging the Community (Outreach) • Marketing campaign • Raising awareness • Participant Navigator • Community Advisory Council • Community research priorities • Access to studies • Web-listing of available studies • basic info/coordinator contact • call center; generic contact list • ResearchMatch.org
Engaging the Investigator (In-reach) • Consultation • Incorporated into consultation request process • Coordinator group • Training • CBPR • Recruitment/Retention graduate course • Research Coordinator degree/certificate
Engaging the Investigator (In-reach) Facilitate linkage with CBOs Recruitment toolkit Databases • national evidence • local evidence • Collaborate with other key functions • Regulatory Support
Metrics Study specific Institutional Level • Using studies closed to recruitment • Met overall recruitment targets • Met minority/gender/age targets • Analyze in aggregate • Sub analyses by department, size of study, type of disease condition Community Level • Survey of community about health research participation , attitudes and barriers