This study examines attitudes of participants who have taken part in health research studies towards data sharing. Data sharing refers to researchers sharing study data at the end of a study with other researchers for further research.
I have designed a questionnaire to capture participant attitudes, drawing on questions asked in previous research (outwith the UK) on this topic.
Little research has been conducted exploring the attitudes of study participants to this sharing of their data and what limited findings there are, largely relate to settings outside of the UK. Although participants may give their consent for their data to be shared when they join a research study, they may not fully understand what this means.
By asking study participants to complete a questionnaire about data sharing we can find out what their attitudes towards it are.
The survey will be distributed to as wide a variety of participants as possible (both in terms of location and type of study they
took part in). This increases the generalisability of the results- they are more likely to apply to the wider population.
It is hoped that the data collected in the survey will show what participants attitudes are likely to be- how they would prefer to
consent to data sharing, how much information about it they would like at the beginning of a study and if they have any
concerns about the concept and processes. This information could then be used by researchers to modify the consent process, the way in which data sharing is explained to participants or the way in which data is shared.