Respectful closure of a CEnR DNA integrity study: A bridge to sustained interactions with research participants.

Abstract

Introduction: Community engagement in research (CEnR) is fundamental to recruitment and retention in research studies. CEnR study closure, with a view to promote subsequent interactions with participants, can foster long-term relationships between research teams and participants. We detail the principles, procedures and outcomes of respectful closure in a study focused on scaling-up tools to measure DNA integrity in population samples.

Methods: The study incorporated CEnR principles and practices, engaging a Community Advisory Board (CAB) to guide most study procedures. The CAB-designed closure protocol included 1) attempts at one-on-one contact via telephone, followed by a letter, if no contact was established; 2) provision of a study closure packet; 3) periodic mailing of study updates; and 4) a request for sustained interaction with the Community Engagement Team (CE Team), including participants' approval to receive invitations for future projects. Items 3 and 4 were framed as choices to further interaction and its extent.

Results: Among 191 participants enrolled, 119 were contacted at closure (62% retention rate). Most frequently (97.5%), contacted participants agreed to receive information about new research projects, while 90.8% agreed to receive ongoing information about the DNA integrity study. Subsequently, the CE Team implemented two study update mailings and two CEnR studies, enrolling 18 participants in a consultative role and four in a collaborative role.

Conclusions: Respectful study closure offers avenues for sustained interaction between CEnR teams and study participants, beyond the discrete boundaries of specific research projects. It can support the long-term connections that enable the positive outcomes of CEnR.