Integration of Social Media With Targeted Emails And In-Person Outreach For Exception From Informed Consent Community Consultation
Cindy H. Hsu, Jennifer Fowler, James A. Cranford, Michael P. Thomas, Robert W. Neumar
Academic Emergency Medicine, 20 August 2021
Abstract
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 at-risk 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 mean age of survey respondents was 45 years; 89.9% were white and 60.1% were women. 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 4-fold compared to an in-person only 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.

“A question of trust” and “a leap of faith”: A qualitative study of participants’ perspectives on consent, privacy and trust in smart home research
Mari-Rose Kennedy, Richard Huxtable, Giles M Birchley, Jonathan C S Ives, Ian J Craddock
JMIR mHealth and uHealth, 1 August 2021
Abstract
Background
‘Ubiquitous’, ‘smart’ computing technology has the potential to assist humans in numerous ways, including health and social care. Covid-19 has notably hastened the move to remote delivery of many health services. Development of technology involves a variety of stakeholders in the process of testing, refinement, and evaluation. Where stakeholders are research participants, this poses practical and ethical challenges, particularly if the research is situated in people’s homes. Researchers must observe prima facie ethical obligations linked to participants’ interests in having their autonomy and privacy respected.
Objective
This research explores ethical considerations around consent, privacy, anonymisation and data-sharing with participants involved in SPHERE, a project developing smart technology for monitoring people’s health behaviours at home. Their unique insights from being part of this unusual experiment offers valuable perspectives on how to properly approach informed consent for similar smart home research in the future.
Methods
Semi-structured qualitative interviews (with adults and children) were conducted with 7 households/16 participants recruited from SPHERE. Purposive sampling was used to invite participants from a range of household types and ages. Interviews were conducted in participants’ homes or on-site at the University of Bristol. Interviews were digitally recorded, transcribed verbatim and analysed using an inductive thematic approach.
Results
Four themes were identified: (1) motivations for participating; (2) transparency, understanding and consent; (3) privacy, anonymity, and data use; and (4) trust in research. Motivations to participate in SPHERE stemmed from an altruistic desire to support research directed towards the public good. Participants were satisfied with the SPHERE consent process despite reporting some difficulties: recalling and understanding information received; the timing and amount of information provision; and sometimes finding the information to be abstract. Participants were also satisfied that privacy was assured and judged that reasons for conducting the research compensated for threats to privacy. Participants trusted the project and the team. Factors relevant to developing and maintaining this trust were the trustworthiness of the research team, provision of necessary information, the control participants had over participation, and positive prior experiences of research involvement.
Conclusions
This small study offers valuable insights into the perspectives of participants in smart home research on important ethical considerations around consent and privacy. The findings might have practical implications for future research regarding the types of information researchers should convey, the extent to which anonymity can be assured, and the long-term duty of care owed to participants who place trust in researchers not only on the basis of this information, but also because of their institutional affiliation. This study highlights important ethical implications: although autonomy matters, trust appears to matter most. Researchers should therefore be alert to the need to foster and maintain trust, particularly as failing to do so might have deleterious effects on future research.