Abstract
Background: Cohort studies gather huge volumes of information about a range of phenotypes but new sources of information such as social media data are yet to be integrated. Participant's long-term engagement with cohort studies, as well as the potential for their social media data to be linked to other longitudinal data, could provide novel advances but may also give participants a unique perspective on the acceptability of this growing research area. Methods: Two focus groups explored participant views towards the acceptability and best practice for the collection of social media data for research purposes. Participants were drawn from the Avon Longitudinal Study of Parents and Children cohort; individuals from the index cohort of young people (N=9) and from the parent generation (N=5) took part in two separate 90-minute focus groups. The discussions were audio recorded and subjected to qualitative analysis. Results: Participants were generally supportive of the collection of social media data to facilitate health and social research. They felt that their trust in the cohort study would encourage them to do so. Concern was expressed about the collection of data from friends or connections who had not consented. In terms of best practice for collecting the data, participants generally preferred the use of anonymous data derived from social media to be shared with researchers. Conclusion: Cohort studies have trusting relationships with their participants; for this relationship to extend to linking their social media data with longitudinal information, procedural safeguards are needed. Participants understand the goals and potential of research integrating social media data into cohort studies, but further research is required on the acquisition of their friend's data. The views gathered from participants provide important guidance for future work seeking to integrate social media in cohort studies.
Highlights
In the Introduction you talk about a range of social media data
In this study we report on participants’ views on social media data linkage in an on-going birth cohort study, the Avon Longitudinal Study of Parents and Children (ALSPAC), known as ‘Children of the Nineties29–31
The focus groups have provided an insight into the views of cohort study participants on using their social media data in research
Summary
In the Introduction you talk about a range of social media data. It is important to clarify from the start what kind of social media data you are referring to in this study. 3. “At present, longitudinal population studies (LPS) remain an untapped resource in terms of obtaining this empirical information, with social media linkage having the potential to add significant value to the data already available in such studies.”. “At present, longitudinal population studies (LPS) remain an untapped resource in terms of obtaining this empirical information, with social media linkage having the potential to add significant value to the data already available in such studies.” This statement is not quite clear and would benefit from reformulation. Results: Participants were generally supportive of the collection of social media data to facilitate health and social research. They felt that their trust in the cohort study would encourage them to do so. In terms of best practice for collecting the data, participants generally preferred the use of anonymous data derived from social media to be shared with researchers
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