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Innovative Use of Social Media Tools to Enhance Retention
in Community-based Research
Gloria M. Miele, Ph.D.1, Aimee N. C. Campbell, Ph.D.1,2, Eva Turrigiano 2, Edward V. Nunes, M.D.1, 2
(1) Columbia University College of Physicians and Surgeons, (2) New York State Psychiatric Institute
ABSTRACT
RESULTS
CONCLUSIONS & IMPLICATIONS
In an effort to increase retention in a community-based multi-site
clinical trial, 3 of 10 sites introduced social media tools to contact
and locate participants enrolled in outpatient substance abuse
treatment. Of 138 eligible participants, 68 (49%) agreed to be
contacted via social media. Most who did not agree did not have a
social media account or reliable access to a computer. Research
staff found social media outlets to be useful, but only used them
when other contact options were exhausted. Technology issues,
confidentiality concerns, and recommendations to establish
systematic guidelines for social media use are presented.
With partial data collection complete, 138 participants were eligible (signed consent
form that included social media) to be contacted using social media tools. Of those, 68
(49%) agreed to be contacted using Facebook, the only social media site offered by
participants. Of those who did not agree, the most common reason for refusal was not
having Facebook or another social media account and/or access to a computer (36%).
Eight participants (6%) refused due to concerns about confidentiality. Research staff
attempted to contact 25% of participants who agreed to using social media. Of those
attempts, over half (56%) were successful.
Social media tools have great potential to educate, engage and
create community to improve health-related outcomes. The use of
social media in clinical research is a new venture, and this study
addresses some of the benefits and barriers to its use. While the
minority of sites in a web-based research study elected not to use
social media to retain participants, those who did found it to be a
useful option, especially when phone, mail and/or home visits were
unsuccessful. Guidelines are needed that address confidentiality,
access to social media sites on networked computers at treatment
programs, and procedures to use social media as a primary tool to
communicate with participants instead of a last resort. One barrier
was that one-third of participants did not have a social media
account or access to an off-site computer. While this may be the
case in other settings, one study found the majority of clients at an
inner city treatment program had online access and experience
with social media sites (Wolf-Branigin, 2009). Further work is
needed to maximize the use of new media tools in retaining clients
in all aspects of community treatment and research.
INTRODUCTION
To improve community health, we must engage, treat and retain
clients in innovative and effective ways. The majority of adults
(65%) are using social media tools (e.g., Facebook, Twitter), on a
regular basis and report positive benefits (Harris Poll, 2011). Social
networks are currently used in a number of ways to improve
community health. For example, community treatment programs
and hospitals use Facebook pages to engage clients and
disseminate information. AIDS.gov has “New Media” guidelines
and recommendations to create social media campaigns for HIV
prevention and education. SAMHSA introduced a “digital
engagement” initiative to provide outreach and feedback to social
media users (Pond, 2011). Using social media tools in research,
however, is less clear, with little guidance on how to apply new
media to clinical research. The National Drug Abuse Treatment
Clinical Trials Network (CTN) recently initiated a Social Media
interest group to develop procedures for using these tools in multisite clinical trials. This uncharted territory of using innovative media
technology in clinical research needs to be explored.
METHODS
Data are derived from an ongoing study of social media tools
used to enhance participant retention as part of a 10-site NIDA
CTN trial. The main trial is evaluating the effectiveness of using
an efficacious, web-based version (Bickel et al., 2008) of the
Community Reinforcement Approach (Budney & Higgins, 1998),
plus motivational incentives, to engage and increase abstinence
among participants in drug treatment. After the trial started, sites
were encouraged to seek IRB approval to use social media tools.
Three programs received approval to add contact via social
media to consent. Research staff documented all contact
attempts on logs, locator forms, and progress notes and
completed a survey to determine: # of eligible participants (post
IRB-approval) to be contacted via social media; # attempted
contacts; # of successful attempts; and # of and reasons for
refusal. The investigators conducted interviews with staff to
understand benefits and obstacles to using these tools.
Table 1: Social media contact by site and overall for contacting, locating and
following up with research participants.
Site A
n (%)
Site B
n (%)
Site C
n (%)
Total
n (%)
Eligible participants
45
50
43
138
Agreed to be contacted using social
media
24 (53)
16 (32)
28 (65)
68 (49)
REFERENCES
Reason not agreed
No Social Media/computer access
Refused
Staff unable to obtain info
16 (36)
1 (2)
4 (9)
18 (36)
7 (14)
9 (18)
15 (35)
0
0
49 (36)
8 (6)
13 (9)
Participants attempted
12 (27)
16 (32)
6 (14)
34 (25)
5 (42)
8 (50)
6 (100)
19 (56)
Successful contacts (of those
attempted)
EXPERIENCES USING SOCIAL MEDIA IN RESEARCH
Using Facebook: Research staff at two sites reported using Facebook as a “last resort,” e.g.,
when they were unable to contact participants by phone/email. One site used it in addition to
email but only if the participant could not be contacted by phone.
Maintaining Confidentiality: By customizing privacy settings, participants may maintain
confidentiality while still communicating on Facebook. For example, one site used the
research staff’s first names for their profile and told clients their user name. This site “friended”
participants, but friends could not be seen by others on the page. Sites communicated
exclusively using private messaging, similar to sending a direct email.
Blocking Social Media: Some treatment programs block social media sites on their internal
networks. Two sites were granted a request to access social media sites. One site could not
gain access, so staff must use an offsite computer to access Facebook for participant contact.
Developing guidelines: Each site had its own approach to using social media, leading to
inconsistent implementation. Developing more explicit guidelines that integrate social media
into a study from the outset would improve replicability and potential usefulness.
Bickel, W.K., Marsch, L.A., Buchhalter, A., & Badger, G. (2008).
Computerized behavior therapy for opioid dependent outpatients: A
randomized, controlled trial. Experimental and Clinical
Psychopharmacology, 16, 132-143.
Budney, A., & Higgins, S. (1998). Therapy manuals for drug addiction, a
community reinforcement plus vouchers approach: Treating cocaine
addiction. Rockville, MD: National Institute on Drug Abuse.
Harris Interactive (January, 2011). The pros, cons and learning curve of
social media. Harrisinteractive.com.
Pond, M.H. (2011). Behavioral health and social media: Increasing
outreach, feedback and virtual communities. SAMHSA Newsletter, 19
(1).
Wolf-Branigin, M. (2009). New media and social networks:
Considerations from clients in addictions treatment. Journal of
Technology in Human Services, 27, 339-345.
GRANT SUPPORT & CONTACT INFORMATION
This research was supported by grants from the National Institute on
Drug Abuse (NIDA): U10 DA13035 (CTN; Edward V. Nunes, MD & John
Rotrosen, MD) and K24 DA022412 (Edward V. Nunes, MD). We would
like to acknowledge the commitment and effort of clinical and research
staff at participating treatment programs. The authors have no conflict of
interest to report.
Inquiries should be directed to the lead author:
Gloria M. Miele, Ph.D.
Phone: 805-482-1625 | Email: [email protected]