Systematic review of public opinion of the ethical considerations of using social media as a data source for research




Poster session 1


Monday 24 October 2016 - 10:30 to 11:00


All authors in correct order:

Golder S1
1 Cochrane Adverse Effects Methods Group, UK
Presenting author and contact person

Presenting author:

Su Golder

Contact person:

Abstract text
Background: Social media are now increasingly being used as a source for the collection of data for health-related research. studies using social media may be included in systematic reviews. In addition, given the plethora of information on social media, social media may become a data source for systematic reviews providing insight into the patient experience or evidence on aspects such as adverse effects of an intervention. This brings about many ethical issues.

Objectives: To review systematically the research literature that has evaluated opinions on the ethical considerations of using social media as a data source for research or surveillance.

Methods: We used the SPIDER approach to define the inclusion criteria for the review. The SPIDER for this systematic review was as follows; S - Sample: any sample of people, P - Phenomenon of Interest: the opinions/views on the ethical implications of using of social media as a source to collect information or data or carry out surveillance by third parties, D - Design: any type of research, E - Evaluation: any information on opinions/views on the ethical implications R - Research type: qualitative (such as interviews or focus groups), quantitative (such as surveys or questionnaires with fixed responses only) or mixed methods (such as research that collates a combination of fixed and open-ended responses). Nineteen databases were searched in addition to reference checking, citation searches and contacting experts. An assessment of methodological quality was carried out, but no quality threshold was implemented. A thematic analysis was carried out on the included studies.

Results: Independently, two reviewers sifted 2934 records. Although a large number of studies were ordered, few met our inclusion criteria. Many studies were discursive or about subjects such as cyberbullying or grooming and child protection. Ethical issues arising from research using social media posts are dependent on the research context such as the type of data sought and by whom and the research purpose.

Conclusions: The authors will present a summary of opinions on the ethical issues arising from research using social media.