Social Media Research 101. By: Dorean J. Flores, CIP Manager, North Shore-LIJ IRB

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1 Social Media Research 101 By: Dorean J. Flores, CIP Manager, North Shore-LIJ IRB

2 CME Disclosure Statement The North Shore LIJ Health System adheres to the ACCME s new Standards for Commercial Support. Any individuals in a position to control the content of a CME activity, including faculty, planners, and managers, are required to disclose all financial relationships with commercial interests. All identified potential conflicts of interest are thoroughly vetted by the North Shore-LIJ for fair balance and scientific objectivity and to ensure appropriateness of patient care recommendations. Course Director and Course Planner, Kevin Tracey, MD and Tina Chuck, MPH have nothing to disclose. Course Presenter, Dorean J. Flores, has nothing to disclose

3 Objectives: Provide an overview of social media, how its being used in research, current concerns that investigators and the IRB should consider from a regulatory, ethical, and logistical perspective.

4 What is Social Media? Social media are computer-media tools that allow people to create, share or exchange information, ideas, and pictures/videos in virtual communities and networks. It s been broadly defined to refer to the many relatively inexpensive and widely accessible electronic tools that enable anyone to publish and access information, collaborate on a common effort, or build relationships.'

5 North-Shore LIJ Policy on Social Media Health System policy on the acceptable use of social media for all employees. Located under policy & procedures on the HR webpage on Healthport. No current HRPP policy on social media. Research utilizing social media research must comply with regulations governing human subject research and address any ethical concerns raised by the IRB. Internal procedures are in place.

6 Traditional/Industrial Media vs. Social Media Social media differ from traditional or industrial media in many ways, including: 1. Reach Facebook: 1.39 billion monthly active users, 890 million active daily users. Instagram: 300 million monthly active users, more than 75 million daily users. Twitter: 288 million monthly active users, 500 million tweets per day.

7 Traditional/Industrial Media vs. Social Media 2. Frequency Each user post as least once a day. Most users are active multiple-times a day. 3. Immediacy In 1 minute, 41K post to FB, 278K tweets on Twitter, 3,600 posts on Instagram, etc.

8 Traditional/Industrial Media vs. Social Media 4. Usability Depending on the information you need, the usability can vary from site to site. 5. Permanence Once a post goes up, there s a record which continues to exist even if the user removes it.

9 Traditional/Industrial Media vs. Social Media 6. Quality of information is arguable, depending on the type of information you are seeking to use. Dependent upon site used, population targeted, desired information, and time of collection. Investigators may require addition assistance to sort through the information to find viable data.

10 The Importance of Social Media Research in social behavior has spanned decades, with the primary challenge in fully understanding the nature and dynamic of these behaviors being situated in the obtainment of sufficient data. With the advent of social media, internet research on social behavior is on the rise. Pros include: the reduced cost and time savings of online data collection over face-to-face and telephone research methods, and the vast amount of data currently available.

11 Uses of Social Media in Research Recruitment Ad placement (most common) Delivery of intervention/interaction Observation of users Data Mining Follow-up on participants

12 Considerations re: Social Media Ads Information is likely transmitted back to social media site (e.g. FB) when people click on recruitment ads Is it appropriate for FB or other companies to have information about prospective participants? Will study sponsor allow it? Could it be considered advertising? For example, the 2014 Draft FDA Guidance about advertising online contains character limited settings.

13 Considerations re: Social Media Ads Who is managing the ad, so that a potential participant doesn t post a comment? Not everyone is a social media user, so other means of outreach may be necessary.

14 Considerations re: Intervention/Interaction How generalizable are the results if eligibility criteria includes use of Internet/social media? Security concerns How is privacy and confidentiality being protected? Can posts be read by other users? Are participants aware that their activity will become a permanent social media imprint?

15 Considerations re: Observation of Users Are users aware they are being observed? Most social networking sites allow users to restrict who has access to information posted. Is social media a natural environment or do people act differently online? Are social media sites a public forum? Can there be a reasonable expectation of privacy while online?

16 Considerations re: Data Mining Data mining is a one-sided transaction, so does privacy settings make the information private? Is all aspects of public behavior, including identify public? If the purpose of social media is to share information, does this include third party use?

17 Is Data Mining Research? Research means a systematic investigation, including research development, testing and evaluation, designed to develop or contribute to generalizable knowledge. Data Mining is the practice of examining large databases in order to generate new information. Is the examination of the data systematic? Is it designed to develop or contribute to generalizable knowledge? If so, does it involve human subjects? A human subject as a living individual about whom an investigator conducting research obtains (1) data through intervention or interaction with the individual; or (2) identifiable private information.

18 Considerations re: Follow-up with Participants Is consent necessary in order to follow-up with participants via social media? How does that contact look like? Direct with participants via the social media site? Post on their social media profile? Can follow-up via social media without prior consent be considered intrusive?

19 What about consent? Should consent be sought from individuals to collect information they post if the project is human subject research? Are investigators responsible for communicating the sites privacy terms of service with the potential participant or is that the responsibility of the subject? If the project is not considered human subject research, should consent from participants be obtained from a purely ethical perspective?

20 Consider this In January 2012 Facebook conducted a study in which News Feeds of about 700,000 randomly selected users were manipulated to filter positive and negative content in order to determine if there was a direct correlation between content and user emotion. FB worked with researchers from Cornell Is this human subject research? Is consent required? Why or why not? Regulatory? Ethics?

21 What do the regulations say? The regulations outline when an investigator and/or institution is engaged in research. These include: Institutions whose employees or agents intervene for research purposes with any human subject of the research by manipulating the environment. Institutions whose employees or agents interact for research purposes with any human subject of the research. Institutions whose employees or agents obtain for research purposes identifiable private information

22 Results Project found that emotions can be spread psychologically on social media. No IRB approval from Cornell because IRB said not HSR because Cornell only involved in designing study and writing paper No consent obtained specifically for this study. Public reaction The study was published on June 2014 in the Proceedings of the National Academy of Sciences (PNAS) and received almost immediate backlash from the public and stirred negative reactions. Users and critics were concerned that participants in the study were not aware that they were being experimented on and informed consent was not sought.

23 Contact Information Dorean Flores, IRB Manager , Stephanie Iannello, PR/Social Media , Emily Ng, Research Communications Manager ,

24 Questions or Comments?