Integration of Social Media With Targeted Emails And In‐Person Outreach For Exception From Informed Consent Community Consultation

Background‘Community consultation’ (CC) is a key step when conducting Exception From Informed Consent research. Social-media-based CC has been shown to reach more people than traditional methods, but it is unclear whether those reached are representative of the community as a whole.MethodsThis is a retrospective analysis of the CC performed in preparation for the PHOXSTAT trial. Social media advertisement campaigns were conducted in the catchment areas of the three participating trauma centers and evaluated by examining Facebook user statistics. We compared these data to georeferenced population data obtained from the U.S. Census Bureau. We examined variations in the proportion of each age group reached, by gender.ResultsOur social media advertisements reached a total of 332 081 individuals in Los Angeles, Birmingham, and Nashville. Although there were differences in the proportion of individuals reached within each age group and gender groups, compared with the population in each area, these were small (within 5%). In Birmingham, participants 55 to 64 years old, 25 to 34 years old, and females 18 to 24 years old were slightly over-represented (a larger proportion of individuals in this age group were reached by the social media campaign, compared with the population resident in this area). In contrast, in Nashville, female participants 45 to 64 years old, and males 25 to 64 years old were over-represented. In Los Angeles, females 45 to 64 years old, and males 25 to 64 years and over were over-represented.DiscussionIn conclusion, this study demonstrates that social media CC campaigns can be used to reach a sample of the community broadly representative of the population as a whole, in terms of age and gender. This finding is helpful to IRBs and investigators, as it lends further support to the use of social media to conduct CC. Further work is needed to analyze how representative community samples are in terms of other characteristics, such as race, ethnicity, and socioeconomic status.Level III evidenceEconomic & Value-based Evaluations.

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Using Social Media to Facilitate Community Consultation for Trials Using Exception from Informed Consent

Annals of Emergency Medicine ◽

10.1016/j.annemergmed.2013.07.241 ◽

2013 ◽

Vol 62 (4) ◽

pp. S150

Author(s):

J.R. Miner ◽

J.C. Moore ◽

N. Maddy ◽

M.H. Biros

Keyword(s):

Social Media ◽

Informed Consent ◽

Community Consultation

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Abstract TMP5: Social Media Campaign with Traditional Community Consultation for Successful Exception from Informed Consent Approval - the SEGA Trial Experience

Stroke ◽

10.1161/str.50.suppl_1.tmp5 ◽

2019 ◽

Vol 50 (Suppl_1) ◽

Author(s):

Peng R Chen ◽

Aditya R Sanzgiri ◽

Sunil A Sheth ◽

Sean I Savitz ◽

Sujatha Sridhar ◽

...

Keyword(s):

Social Media ◽

Informed Consent ◽

Media Campaign ◽

Community Consultation ◽

Trial Experience

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Abstract 135: Integration of Social Media With Targeted Emails and interviews for Exception From Informed Consent Community Consultation

Circulation ◽

10.1161/circ.138.suppl_2.135 ◽

2018 ◽

Vol 138 (Suppl_2) ◽

Author(s):

Cindy H Hsu ◽

Jennifer Fowler ◽

James A Cranford ◽

Michael P Thomas ◽

Robert W Neumar

Keyword(s):

At Risk ◽

Social Media ◽

Cardiac Arrest ◽

Informed Consent ◽

Small Sample Size ◽

Small Sample ◽

Community Consultation ◽

Cardiac Catheterization Laboratory ◽

The Social ◽

Interview Group

Introduction: Exception from informed consent (EFIC) enables the enrollment of subjects with emergent conditions for clinical trials without prior consent. All EFIC studies are required to include community consultation (CC). However, CC implementation is often challenged by significant cost and scarce community engagement. Hypothesis: We hypothesize that the utilization of social media, targeted emails, and interviews of at-risk individuals and their caretakers can lead to more effective EFIC CC. Methods: We utilized social media and targeted emails/interviews for the EFIC CC of the ACCESS to the Cardiac Catheterization Laboratory in Patients Without ST-Segment Elevation Myocardial Infarction Resuscitated From Out-of-hospital Ventricular Fibrillation Cardiac Arrest Trial. We disseminated study advertisements with survey links and opt-out option using Facebook/Instagram to our communities and targeted emails to prehospital and cardiology providers. We also interviewed at-risk individuals with cardiac conditions, their caretakers, and patient advocacy groups. Between-group comparisons of proportions were tested using modified chi-squared tests for small sample size. Results: We collected 559 fully or partially completed surveys over an eight-week period. The majority of the surveys (70.5%) were obtained using social media. The mean age was 45 years; 90% were white and 61% were female. Overall, 91.3% believed ACCESS is an important study. The interview group had significantly more loved ones with cardiac arrest than the social media (50% vs 36.7%, p < 0.05) or targeted email (50% vs 23.6%, p < 0.005) group. Compared to the interview group, more from social media (81.8% vs 63.3%, p < 0.05) and targeted email (77.4% vs 63.3, p < 0.05) groups said they would include their loved ones in the study. More from the interview group believed that their opinion would be considered seriously compared to the social media (75.9% vs 62.6%, p < 0.05) and targeted email (75.9% vs 54.5%, p < 0.05) groups. No one opted out from the study. Conclusions: The integration of social media with targeted emails and interviews is an effective approach for EFIC CC. Future work is necessary to determine the perception and best utilization of these strategies for EFIC studies.

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