Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers

Abstract

Qualitative health data are rarely shared in the United States (U.S.). This is unfortunate because gathering qualitative data is labor and time-intensive, and data sharing enables secondary research, training, and transparency. A new U.S. federal policy mandates data sharing by 2023, and is agnostic to data type. We surveyed U.S. qualitative researchers (N = 425) on the barriers and facilitators of sharing qualitative health or sensitive research data. Most researchers (96%) have never shared qualitative data in a repository. Primary concerns were lack of participant permission to share data, data sensitivity, and breaching trust. Researcher willingness to share would increase if participants agreed and if sharing increased the societal impact of their research. Key resources to increase willingness to share were funding, guidance, and de-identification assistance. Public health and biomedical researchers were most willing to share. Qualitative researchers need to prepare for this new reality as sharing qualitative data requires unique considerations.

‘Routine Infrastructuring’: How Social Scientists Appropriate Resources to Deposit Qualitative Data to ICPSR and Implications for FAIR and CARE

“…Yet, studies of data management in the social sciences reported a lack of convergence on norms for preparing qualitative data for deposit (Antes et al, 2018). The heterogeneity of qualitative data can pose challenges to developing generalizable best practices (Elman et al, 2010; Mozersky et al, 2021), a lack of convergence on norms for managing and depositing qualitative data that can lead scientists to improvise data management practices (Bratt, 2022, 2023). For example, scientists' practices of anonymizing data to prepare interview transcripts for deposit can be ad hoc (Crowston & Qin, 2011).…”

“…In other words, even if there are computational scripts that tell computers how to handle the data (ostensive routines) they are not always specific enough to guarantee an exact execution of the process (performative routines). The social sciences may represent even greater challenges, given the relatively increased heterogeneity of data and ambiguous ostensive routines (or none at all) specifying the data management actions to take (Borgman et al, 2021; Mozersky et al, 2021).…”

A Content Analysis of 100 Qualitative Health Research Articles to Examine Researcher-Participant Relationships and Implications for Data Sharing

“…Data sharing mandates may be resisted if qualitative researchers are reticent to share due to concerns about negatively affecting existing relationships between researchers and participants (Mozersky, Walsh, et al, 2020; Mozersky et al, 2021). We conducted a survey of 425 qualitative researchers in the U.S. who gather health related or sensitive data (Mozersky et al, 2021). Only 4% of qualitative researchers had ever shared their data in a repository, and their top concerns regarding qualitative data sharing include the sensitivity of the data (85%) and breach of participant trust (82%).…”

“…Data sharing mandates may be resisted if qualitative researchers are reticent to share due to concerns about negatively affecting existing relationships between researchers and participants (Mozersky, Walsh, et al, 2020; Mozersky et al, 2021). We conducted a survey of 425 qualitative researchers in the U.S. who gather health related or sensitive data (Mozersky et al, 2021).…”

“…Qualitative data sharing is rare in the United States (U.S.) (Mozersky et al, 2021; Yoon, 2014). Some countries, such as the UK and Australia, have more established infrastructure and services to support qualitative data sharing, yet overall it remains an uncommon practice (Bishop & Kuula-Luumi, 2017; Broom et al, 2009; Corti et al, 2016; Yardley et al, 2014).…”