helps to contextualize the importance of the time and energy that they are putting forth . Sharing progress on major study milestones , such as completing enrollment , as well as any preliminary findings or procedure updates will go a long way toward enhancing and facilitating engagement . You can achieve this by hosting study webinars , distributing a quarterly newsletter ( one for participants and one for study staff ) or posting updates to a study website .
+ + Express appreciation : One of the most critical components of the retention strategy is to let site staff and study participants know how grateful you are for their involvement . During the planning phase , the retention committee should think through and identify milestones at which to demonstrate a token of appreciation . These might include completion of participant ’ s first study visit , conclusion of study enrollment or holidays ( e . g ., birthdays , Halloween , New Year ’ s ). Expressions of gratitude can take the form of thank-you cards , coffee mugs or other memorabilia that serve as a reminder of their contribution .
+ + Share study results : Once study analyses have been completed , let site staff and study participants know how and when they can learn about trial results . If possible , post links to any webinars or publications on your study website . Sharing these results with participants is a way to create long-term community engagement and shows individuals how their contributions advanced research . Even if the results are not positive , helping participants understand the lessons that were learned from their involvement is invaluable . Remember the following ethical and logistical factors as you prepare to share study results :
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Outline a communication plan in your study protocol : After consultation with a central Institutional Review Board ( IRB ), create a strategy for communicating study results to participants that includes how the results will be shared ( e . g ., via letter , webinar or newsletter ).
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Make a commitment to share study results : Although it may take several years from the start of a study for results to be available , study teams must be determined to share results with all participants and develop a plan to do so .
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Consult an ethical review board : Speak with an ethical review board member about what is required to share results with participants after study completion and plan accordingly .
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Request permission for future communication : The study ’ s informed consent document should ask participants for their contact information , including email address , and consent to be contacted about study results . Consult your IRB regarding appropriate language for the consent form .
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Develop materials to share results : Decide between individual or mass communication of study results . Use letters or email for individual communication . For mass communication , consider hosting a webinar or posting on a study website . Even if you choose mass communication , create an individual letter , email or phone script to inform participants about the webinar date or publication of results on a website . Although results may not be available for some time , submit the communication materials and strategy to the IRB for approval prior to study closure . Doing so will ensure timely distribution of findings once available .
– – Confirm contact information : For individuals who agreed to be contacted in the future regarding study results , ensure that contact information is up-to-date at the last study visit . Create a secure document to house and easily access this information when study results are available
38 Accelerating Clinical Trials : Best Practices for Recruitment and Retention