scholarly journals Using social media for community consultation and public disclosure in exception from informed consent trials

2016 ◽  
Vol 80 (6) ◽  
pp. 1005-1009 ◽  
Author(s):  
Shannon W. Stephens ◽  
Carolyn Williams ◽  
Randal Gray ◽  
Jeffrey D. Kerby ◽  
Henry E. Wang ◽  
...  
Circulation ◽  
2013 ◽  
Vol 128 (3) ◽  
pp. 267-270 ◽  
Author(s):  
Shannon W. Stephens ◽  
Carolyn Williams ◽  
Randal Gray ◽  
Jeffrey D. Kerby ◽  
Henry E. Wang

Author(s):  
Neal W. Dickert ◽  
Kathleen Metz ◽  
Michael D. Fetters ◽  
Adrianne N. Haggins ◽  
Deneil K. Harney ◽  
...  

2019 ◽  
Vol 234 ◽  
pp. 65-71 ◽  
Author(s):  
John A. Harvin ◽  
Jeanette M. Podbielski ◽  
Laura E. Vincent ◽  
Mike K. Liang ◽  
Lillian S. Kao ◽  
...  

2007 ◽  
Vol 2 (3) ◽  
pp. 23-30 ◽  
Author(s):  
Nicole M. DeIorio ◽  
Katie B. McClure ◽  
Maria Nelson ◽  
K. John McConnell ◽  
Terri A. Schmidt

Since 1996, U.S. federal regulations allow research without informed consent to study emergency conditions, if there is currently no satisfactory treatment for the condition, no time to obtain advance consent from the patient or representative, and if there is community involvement through a public disclosure and community consultation process. REB experiences since then are unknown. We surveyed REB chairpersons at the 126 United States medical schools to quantify reviewed protocols and identify attitudes about the rule, to better understand the rule's impact on REBs. Sixty-nine surveys were returned (55%). Fifty-two respondents reviewing human research had heard of the Rule. Forty-eight percent (25/52) had reviewed such a study; 40% of those had rejected at least one. Seventy-eight percent believe the rule protects human subjects, and 88% feel prepared to implement them. REB views differed from public opinion on how best to enact notification and consultation.


2007 ◽  
Vol 50 (4) ◽  
pp. 448-455.e4 ◽  
Author(s):  
Joshua G. Salzman ◽  
Ralph J. Frascone ◽  
Bobette K. Godding ◽  
Terry A. Provo ◽  
Elie Gertner

2014 ◽  
Vol 12 (1) ◽  
pp. 67-76 ◽  
Author(s):  
Maija Holsti ◽  
Roger Zemek ◽  
Jill Baren ◽  
Rachel M Stanley ◽  
Prashant Mahajan ◽  
...  

Author(s):  
Cindy H. Hsu ◽  
Jennifer Fowler ◽  
James A. Cranford ◽  
Michael P. Thomas ◽  
Robert W. Neumar

2021 ◽  
Vol 6 (1) ◽  
pp. e000830
Author(s):  
Paige Farley ◽  
Shannon W Stephens ◽  
Brandon Crowley ◽  
Sean P Collins ◽  
Monica D Wong ◽  
...  

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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