Participants’ Attitudes Towards Data Sharing

Abstract

Most research funders and journals now advise or require that research data should be made available for data sharing post publication. Sharing is widely practiced in other research communities but is less common in public health and clinical trials. When beginning this study, participants’ views of data sharing in clinical trials or public health research were little explored. This study therefore aimed to examine participants’ attitudes towards data sharing where participants had taken part in clinical trials, public health research, longitudinal studies or were interested members of the public. A questionnaire survey was developed, informed by a scoping focus group and a systematic review of the international literature. This was accompanied by a scoping review of grey literature. Thematic analysis of the studies included in the systematic review identified six key themes and the grey literature review identified 16 relevant guidance documents. The questionnaire was completed by 1,664 participants. There was a large degree of corroboration between the systematic review data and the respondent’s answers in the questionnaire. Generally, participants were most concerned about privacy and data security and exhibited concerns about open access and sharing with commercial organisations. Anonymisation and privacy were the areas of grey literature that converged the most with participant requirements, but generally the grey literature did not allude to participants’ concerns. Recommendations for data sharing best practice were made, based upon the available evidence. The strengths of this PhD study are the wide range of evidence gathered, however, as with many surveys, sample and response bias impact upon the generalisability of results. This study provides up-to-date evidence from the UK regarding research participants’ attitudes towards sharing of their study data. Researchers may use this data and the best practice recommendations to ensure that sharing practices align with participant preferences.