Practical and Ethical Considerations for Using Social Media in Community Consultation and Public Disclosure Activities

Galbraith, Kyle L.

doi:10.1111/acem.12483

Cited by 5 publications

(7 citation statements)

References 9 publications

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“…[125][126][127] This has been applied to cardiac arrest and trauma-related research involving exception from informed consent. Requirements are in place for community consultation and public disclosure, yet how to best achieve broad outreach has not been well defined.…”

Section: Community Consultation For Researchmentioning

confidence: 99%

“…125 These include understanding the format of the social media platform of interest, identifying how that format can be related to the goals of outreach, determining whether the intended audience for outreach is the same audience reached by the selected social media platform, and determining how to quantify and evaluate the outreach efforts using available metrics from the social media platform.…”

Section: Community Consultation For Researchmentioning

confidence: 99%

See 1 more Smart Citation

Use of Mobile Devices, Social Media, and Crowdsourcing as Digital Strategies to Improve Emergency Cardiovascular Care

Rumsfeld¹,

Brooks²,

Aufderheide³

et al. 2016

Circulation

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Section: Community Consultation For Researchmentioning

confidence: 99%

Section: Community Consultation For Researchmentioning

confidence: 99%

Use of Mobile Devices, Social Media, and Crowdsourcing as Digital Strategies to Improve Emergency Cardiovascular Care

Rumsfeld¹,

Brooks²,

Aufderheide³

et al. 2016

Circulation

View full text Add to dashboard Cite

“…More recently, clinical trials have started using social media (e.g. Facebook, Twitter), text messaging, and blogs to recruit and enhance retention of participants (Gurol-Urganci et al, 2013) and to meet regulatory requirements of community consultation (Stephens et al, 2013; Galbraith, 2014), as well as mobile technologies (tablets, smartphones) to collect data (surveys, patient reported outcomes) and assess or monitor study compliance (Wagner et al, 2014). Investigators are also starting to integrate other innovative data collection approaches, such as using apps (Buller, Borland, Bettinghaus, Shane, & Zimmerman, 2014), GPS (global positioning system) (Epstein et al, 2014), and wearable devices (Hossain et al, 2014).…”

Section: 0 Integrating E-technologies Into Clinical Trial Design Imentioning

confidence: 99%

Using e-technologies in clinical trials

Rosa

Campbell

Miele

et al. 2015

Contemporary Clinical Trials

136

111

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Clinical trials have been slow to incorporate e-technology (digital and electronic technology that utilizes mobile devices or the Internet) into the design and execution of studies. In the meantime, individuals and corporations are relying more on electronic platforms and most have incorporated such technology into their daily lives. This paper provides a general overview of the use of e-technologies in clinical trials research, specifically within the last decade, marked by rapid growth of mobile and Internet-based tools. Benefits of and challenges to the use of e-technologies in data collection, recruitment and retention, delivery of interventions, and dissemination are provided, as well as a description of the current status of regulatory oversight of e-technologies in clinical trials research. As an example of ways in which e-technologies can be used for intervention delivery, a summary of e-technologies for treatment of substance use disorders is presented. Using e-technologies to design and implement clinical trials has the potential to reach a wide audience, making trials more efficient while also reducing costs; however, researchers should be cautious when adopting these tools given the many challenges in using new technologies, as well as threats to participant privacy/confidentiality. Challenges of using e-technologies can be overcome with careful planning, useful partnerships, and forethought. The role of web- and smartphone-based applications is expanding, and the increasing use of those platforms by scientists and the public alike make them tools that cannot be ignored.

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“…24 As such, if the community at risk includes those above 65 years of age, relying solely on social media for community consultation will likely be insufficient. 25 In that scenario, our approach of integrating social media with targeted in-person outreach may be more effective. Potential socioeconomic and racial disparities should also be considered when utilizing social media for community consultation, as access to smartphones and Internet may be more limited in certain populations.…”

Section: Ta B L E 5 Cost Analysis Of Community Consultation For Acces...mentioning

confidence: 99%

Integration of social media with targeted emails and in‐person outreach for exception from informed consent community consultation

Hsu

Fowler

Cranford

et al. 2021

Academic Emergency Medicine

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Background: Exception from informed consent (EFIC) enables the enrollment of research subjects with emergent conditions to clinical trials without prior consent. EFIC study approval requires community consultation and public disclosure. We hypothesized that the integration of social media with targeted emails and in-person outreach is an effective community consultation strategy. Methods:We utilized social media with targeted emails and in-person outreach for the community consultation of the ACCESS cardiac arrest trial. Study advertisements were disseminated using Facebook and Instagram, and targeted emails were sent to emergency medicine, prehospital, and cardiology providers. We also interviewed atrisk individuals with cardiac conditions, their caretakers, and patient advocacy groups.Participants were asked to complete a survey about their opinions about the study. Results:We collected 559 surveys over an 8-week period, and 70.5% of the surveys were obtained using social media. The median (IQR) age of survey respondents was 44 (33-57) years; 89.9% were White and 60.1% were women. A total of 91.3% believed ACCESS was an important study. Compared to the in-person 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 in-person 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. The incorporation of social media and targeted emails for community consultation reduced the cost per survey by fourfold compared to an in-persononly strategy. Conclusions:The integration of social media with targeted emails and in-person outreach was a feasible and cost-saving approach for EFIC community consultation.Future work is necessary to determine the perception and best utilization of social media for community consultation.

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Practical and Ethical Considerations for Using Social Media in Community Consultation and Public Disclosure Activities

Cited by 5 publications

References 9 publications

Use of Mobile Devices, Social Media, and Crowdsourcing as Digital Strategies to Improve Emergency Cardiovascular Care

Use of Mobile Devices, Social Media, and Crowdsourcing as Digital Strategies to Improve Emergency Cardiovascular Care

Using e-technologies in clinical trials

Integration of social media with targeted emails and in‐person outreach for exception from informed consent community consultation

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