Abstract P6-15-02: Study result dissemination preferences of research participants in the Army of Women® program

Abstract

Abstract Background: The Army of Women (AOW) is a breast cancer research program of Dr. Susan Love Research Foundation (DSLRF). This initiative aims to accelerate breast cancer (BC) research by engaging and connecting the public with clinical research. To date, over 382,000 women and men, with and without BC, have registered as members. AOW members have full access to a curated repository of supported research studies and educational resources about the science of BC and the clinical research process. This highly motivated, proactive membership has donated their time, biological samples, and health data to advance studies over the last 10 years. Previous literature has demonstrated that research volunteers are less likely to participate in future studies if not informed of study results. With a membership that has volunteered to participate in over 130 studies, we sought to examine members' interest in receiving study results and preferred dissemination methods. Methods: An adaptive, anonymous, online survey collected data on demographics, motivations, engagement behaviors, and attitudes toward research. Participants (N=1,486 to date) were recruited via email (AOW members only) and social media (AOW members and non-members; Facebook posts and ads). Responses were analyzed to understand participant preferences in study result dissemination and outreach methods. For these analyses, the cohort was limited to AOW members who completed the survey and reported past participation in AOW-supported studies. Results: Of the 1,486 respondents, 527 (mean age 62.7 years, range 30-85) indicated AOW membership and reported past participation in AOW-supported studies. The majority was female (99%) and non-Hispanic white (94%). Over half (65.46%) reported a history of BC. Of participants, 71% would like to learn about scientific results from studies that included members of the AOW. The preferred dissemination frequency and methods are monthly via email (61%) or social media (26%). Based on participants' reported social media use, dissemination through Facebook (74%) would yield the greatest reach – followed by YouTube (24%), Instagram (22%), LinkedIn (15%), Twitter (14%), and Snapchat (4%). In addition to updates about study results, 75% of participants want to hear about publications from past AOW-supported studies. Importantly, a majority (84%) of those also want access to a brief overview and lay explanation of the publication. The preferred methods of dissemination for these publications and lay overviews are AOW newsletters (84%), a dedicated menu on the AOW website (51%), social media (29%), and blog posts on the DSLRF website (16%). Conclusions: As in prior literature, clinical research participants in the AOW program indicate a high preference for receiving updates and staying informed about past study results. Participants indicate that they prefer to receive these results through emailed newsletters, websites, and social media. Researchers should consider these low-cost methods as they plan for result dissemination. Our findings support that volunteers want to be informed about results of their participation. This provides a clear opportunity for researchers to keep volunteers engaged and interested in participating in future clinical research. Citation Format: Laurita N, Roudebush L, Eshraghi L, Love S. Study result dissemination preferences of research participants in the Army of Women® program [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P6-15-02.