Accepted for/Published in: JMIR Human Factors
Date Submitted: Oct 4, 2023
Open Peer Review Period: Oct 4, 2023 - Nov 29, 2023
Date Accepted: Sep 5, 2024
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Social media recruitment as a trigger for vulnerability? A multi-stakeholder interview study
ABSTRACT
Background:
Social media recruitment is increasingly applied for clinical studies. However, empirical analyses focusing on the ethical aspects pertinent when targeting patients with vulnerable characteristics are lacking.
Objective:
This study aims to explore expert and patient perspectives on vulnerability in the context of social media recruitment and seeks to explore how social media can reduce or amplify vulnerabilities.
Methods:
As part of an international consortium that tests a therapeutic vaccine against Hepatitis B (TherVacB), we conducted 30 qualitative interviews with multidisciplinary experts in social media recruitment from the fields of clinical research, public relations, psychology, ethics, philosophy, law, and social sciences about the ethical, legal, and social challenges of social media recruitment. Findings were triangulated with the perceptions of six Hepatitis B patients regarding social media usage and attitudes relative to their diagnosis.
Results:
Experts perceived social media recruitment to be beneficial for reaching hard-to-reach populations and preserving patient privacy. Features that may aggravate existing vulnerabilities are the acontextual point of contact, potential breaches of privacy, biased algorithms disproportionately affecting disadvantaged groups, and technological barriers such as insufficient digital literacy skills and restricted access to relevant technology. We also report several practical recommendations from experts to navigate these triggering effects of social media recruitment – including transparent communication, addressing algorithm bias, privacy education, and multi-channel recruitment.
Conclusions:
Utilising social media for clinical study recruitment can both mitigate and aggravate the vulnerabilities of potential study participants. Researchers should anticipate and address the outlined triggering effects within the study design and proactively define strategies to overcome them. The study provides concrete practical recommendations to achieve this.
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.