29 Sharing qualitative health and social care research data: key stakeholder views

Background The shift towards Open Science means that there is an increasing expectation amongst funders and publishers of health and social care research in the UK that all data be made available for re-use. This expectation is, in large part, modelled on established quantitative data sharing practices. This potentially raises ethical, theoretical, methodological and practical challenges for the sharing and secondary analysis of qualitative data within health and social care research. Aim To explore key stakeholders' views on qualitative data sharing and re-use in health and social care research. Methods One-to-one qualitative interviews and focus group discussions were conducted with researchers, data librarians/managers, funders, experts in research ethics and information governance, and participants in qualitative research. Interviews/focus groups explored ethical, theoretical, methodological and practical issues related to qualitative data sharing and re-use, including concerns around data security and trust, and practicalities of data sharing. Findings Stakeholders described qualitative data sharing and re-use as ethically valuable in terms of maximising the value of primary data. Stakeholders discussed key motivators, including altruism, accessibility of a range of data (particularly for early career researchers and students), and generating research impact through data re-use. Concerns were expressed in relation to obtaining 'informed' consent, data security and access, workloads associated with the anonymisation of qualitative data, and the quality of available data including meta-data to aid contextual understanding of datasets. The ethical and methodological challenges of doing qualitative secondary analysis were also discussed. Conclusions A move towards sharing qualitative data requires engagement with the research community, including those who have contributed their data to research, to mitigate identified obstacles while enhancing existing motivations to both share data and to seek out data for secondary analysis.