Research Participant Views regarding Qualitative Data Sharing

Abstract

We found no studies in the United States that explored research participants' perspectives about sharing their qualitative data. We present findings from interviews with 30 individuals who participated in sensitive qualitative studies to explore their understanding and concerns regarding qualitative data sharing. The vast majority supported sharing qualitative data so long as their data were deidentified and shared only among researchers. However, they raised concerns about confidentiality if the data were not adequately deidentified and about misuse by secondary users if data were shared beyond the research community. These concerns, though, did not deter them from participating in research. Notably, participants hoped their data would be shared and may have expected or assumed this was already happening. While many could not recollect details about data‐sharing plans for studies in which they participated, they trusted researchers and institutions to appropriately handle data sharing. If individuals view data sharing as an extension or integral part of their participation in qualitative research, then researchers may have a stronger obligation to share qualitative data than previously thought. Guidelines and tools to assist researchers and institutional review board members in ethical and responsible qualitative data sharing are urgently needed.

Qualitative Data Sharing: Participant Understanding, Motivation, and Consent

“…The overwhelming majority of our respondents agreed to data sharing, which aligns with results from prior studies (Cummings et al, 2015;Kuula, 2011;Mozersky et al, 2020). Similarly, our respondents expressed that a desire to help and improve research were primary motivations for agreeing to data sharing, which mirrors the results of other research, both for qualitative and quantitative data (Mozersky et al, 2020;Shah et al, 2019).…”

Qualitative Data Sharing: Participant Understanding, Motivation, and Consent

“…The overwhelming majority of our respondents agreed to data sharing, which aligns with results from prior studies (Cummings et al, 2015;Kuula, 2011;Mozersky et al, 2020). Similarly, our respondents expressed that a desire to help and improve research were primary motivations for agreeing to data sharing, which mirrors the results of other research, both for qualitative and quantitative data (Mozersky et al, 2020;Shah et al, 2019). Among the small number of respondents who did not consent to data sharing, concern about confidentiality and how secondary researchers might use their data arose as major barriers to sharing, as Yardley et al (2014) found.…”

Enabling qualitative research data sharing using a natural language processing pipeline for deidentification: moving beyond HIPAA Safe Harbor identifiers

“…Interviews were audio-recorded and then transcribed verbatim by a professional transcription service. 4 , 13 …”

“… 4 , 5 In concurrent work, we explored the attitudes of qualitative researchers, data curators, institutional review board (IRB) members, and qualitative research participants regarding the barriers and benefits of QDS. 4 , 13 While attitudes toward QDS vary, there is broad willingness and support of QDS among stakeholder groups. The biggest barriers to QDS currently are lack of knowledge, resources, and algorithms and support software, to facilitate the deidentification of qualitative data so that it can be responsibly and ethically shared in a data repository.…”

“…The biggest barriers to QDS currently are lack of knowledge, resources, and algorithms and support software, to facilitate the deidentification of qualitative data so that it can be responsibly and ethically shared in a data repository. 4 , 13 …”