Abstract
BackgroundAn often heard and justifiable concern of ethnic minorities is related to researchers’ lack of attention to sharing the results of a study with participants after the study has concluded. Few studies have examined the effects of returning overall study results on participants’ attitudes, especially among populations underrepresented in research. Among Latina research participants, providing a summary of study results could enhance participation in research. We assess Latina breast cancer survivors’ reactions to receiving study results and their attitudes about participating in future studies.MethodsFor this cross-sectional survey study, all women who had participated in two behavioral randomized controlled trials (RCTs) were mailed a letter summarizing the study results (using written and graphic formats) and a questionnaire assessing problems and understanding the results, importance of sharing results, willingness to participate in future studies, and format preferences for receiving the results. A postage-paid envelope for returning the completed questionnaire was included. Logistic regression examined the associations of age, education, and rural/urban residence on format preferences and willingness to participate. The survey sample consisted of 304 low-income, predominantly Spanish-speaking Latina breast cancer survivors (151 from urban and 153 from rural communities) who had participated in two RCTs testing a stress management program designed for Latina breast cancer survivors.ResultsNinety-two women returned the questionnaires (30.3%). Most of the women (91.1%) indicated that they had no trouble understanding the results of the study, and 97% agreed that it is very/extremely important for researchers to share the study result with the participants. The majority (60.2%) reported that receiving the results increased their willingness to participate in future studies. About half (51.7%) did not have a format preference, 37.4% preferred written summaries, and 10.9% preferred graphs.ConclusionsThis study is an important first step to understanding the impact of returning study results among a population that is underrepresented in research. Returning the results of studies and understanding the impact of doing so is consistent with maintaining community involvement in all phases of research. The findings suggest that sharing aggregate research results in simple language yields few problems in participants’ understanding of the results and is viewed as important by participants.Trial registrationClinicalTrials.govNCT02931552 Date registered: October 13, 2016 and NCT01383174 Date registered: June 28, 2011.
Highlights
An often heard and justifiable concern of ethnic minorities is related to researchers’ lack of attention to sharing the results of a study with participants after the study has concluded
The findings suggest that sharing aggregate research results in simple language yields few problems in participants’ understanding of the results and is viewed as important by participants
Within about 6 months after the completion of each randomized controlled trials (RCTs) study, all 304 RCT study participants were sent a mailing that included a letter in Spanish thanking them for their participation and providing the results of the RCT in two simple formats: a plain language, bulleted list of the main findings (Fig. S1: English and Spanish versions of the letter with aggregate RCT results sent to Nuevo Amanecer study participants), and a graphical presentation of the main findings (Fig. 1: graphs describing the results in English and in Spanish)
Summary
An often heard and justifiable concern of ethnic minorities is related to researchers’ lack of attention to sharing the results of a study with participants after the study has concluded. Due to historical and structural factors in the USA, ethnic minorities tend to report greater mistrust of researchers [1, 2] This perspective is so pervasive that scholars of community-based participatory research (CBPR) have coined the phrase “helicopter research” to describe researchers who drop in, collect data, and do not return to the community [3]. The lack of communication of the results could further exacerbate feelings of mistrust and make minority participants less likely to participate in future studies [3]. The magnitude of this issue is evidenced in the mixed response among ethnic minorities to participating in the coronavirus infectious disease 19 (COVID-19) clinical trials despite being disproportionately burdened by the pandemic [4, 5]. Providing results to study participants demonstrates respect for the participants as collaborators, makes them feel valued and included after the research has ended, and potentially facilitates their willingness to participate in future projects [8, 9, 11, 12]
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