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VOICE members views on data sharing

VOICE members took part in a scoping focus group on 27th October 2017 to discuss their attitudes towards Data Sharing. Data Sharing refers to research data being given to other researchers who may perform further, secondary research. The focus group was ‘scoping’ in nature as it was being used as a tool to determine whether themes previously identified by the researcher in a systematic review (of the available literature on participant’s attitudes towards data sharing (Howe et al., 2018)) were also identified using a ‘real’ sample of participants.

In the focus group VOICE members discussed data sharing amongst themselves, loosely following a topic guide constructed by the researcher. Their input was valuable in determining whether the literature around participant’s attitudes towards data sharing was reflective of individuals’ views in other settings.  

The focus group transcripts were imported into software used for qualitative research (NVivo Version 10) and a brief thematic analysis was conducted to identify key themes.  Four main themes were identified; 1) The Nature of Data Today (encompassing data security, linkage, legislation and sharing with commercial bodies), 2) How to Maintain Privacy Ethically (including anonymisation, ethics committees and the consent process), 3) Different Users Different Trust (referring to the differing levels of trust in different institutions), and 4) How Sharing Affects Me (exploring how data sharing has the potential to cause harm, but also to benefit the individual and society). There was a large degree of corroboration between the themes identified in the Systematic Review and those identified in the Scoping Focus group, with many of the same issues being discussed by participants. 

The themes identified during the focus groups will be used to inform development of a questionnaire for the next stage of the researchers PhD project. Each theme identified by VOICE participants will be included in the questionnaires.  It is intended that the language and expression used by participants in the scoping focus group will also be reflected in the questionnaire questions, ensuring they are in language that participants will relate to. The questionnaires will attempt to determine attitudes of a larger and potentially more diverse population of participants. It is hoped that the outcome of this research overall is a successful PhD thesis, but also a body of evidence for funders or researchers regarding participants attitudes towards data sharing, which could be incorporated into policy or best practice.

Nicola Howe
Database Manager & PhD Student (Institute of Health and Society)

Howe, N., Giles, E., Newbury-Birch, D. and McColl, E. (2018) 'Systematic review of participants’ attitudes towards data sharing: a thematic synthesis', Journal of Health Services Research & Policy, 23(2), pp. 123-133.


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