Social media has the potential of increasing public awareness and participation in healthcare research. It is a promising new area for exploring “how patients conceptualize and communicate specific health issues”. The heightened public awareness encourages more enrollment and participation in potentially beneficial clinical trials.
Healthcare research on social media poses new ethical dilemmas however. Such research on a new public environment may require new ethical guidelines. Privacy issues remains on top of these ethical concerns. Without clear guidelines, investigators are at loss on how to meet their responsibilities to participants and the medical profession. Should they ask consent for investigating healthcare data that are on public space?
Finally, interpreting data from social media healthcare research remains a challenge. To be valid, data mining, monitoring signals and validation of social media vocabularies often needs corroboration from other methods of obtaining healthcare information.
Join #HealthXPh chat this Saturday January 21, 2017 9:00 PM Manila time as we discuss these ethical issues in conducting healthcare research on social media:
- T1. Is informed consent needed when using data gathered from social media?
T2. Should investigators make public their intentions of doing healthcare social media research? Why? or why not?
T3.What are the limitations of healthcare research on social media??
Just use the hashtag #HealthXPh when joining this twitter chat on Saturday.
Header photo/poster courtesy of Matthew S. Katz MD; Disease-specific hashtags for online communication about cancer care. 2015 ASCO Annual Meeting publication
- Sedrak MS, Cohen RB, Merchant RM, Schapira MM. Cancer Communication in the Social Media Age. JAMA Oncol. 2016;2(6):822-823. doi:10.1001/jamaoncol.2015.5475
- Matthew S. Katz et al. J Clin Oncol 33, 2015 (suppl; abstr 6520)
- Denecke K; Ethical aspects of using medical social media in healthcare applications.Stud Health Technol Inform. 2014;198:55-62.
- Holly A. Taylor, Ellen Kuwana, and Benjamin S. Wilfond; Ethical Implications of Social Media in Health Care Research; The American Journal Of Bioethics Vol. 14 , Iss. 10,2014