Social Media Recruitment as a Potential Trigger for Vulnerability: Multistakeholder Interview Study.

Background More clinical studies use social media to increase recruitment accrual. 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. We triangulated the expert assessments with the perceptions of 6 patients with hepatitis B regarding social media usage and attitudes relative to their diagnosis.Results Experts perceived social media recruitment as 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 user 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 multichannel recruitment.Conclusions Using social media for clinical study recruitment can mitigate and aggravate potential study participants' vulnerabilities. Researchers should anticipate and address the outlined triggering effects within this study's design and proactively define strategies to overcome them. We suggest practical recommendations to achieve this.

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Publication Details

Journal
Open Access CRIS of the University of Bern
Published
2024-12-30
DOI
https://doi.org/10.48620/84579
Primary Topic
Social Media in Health Education
Type
article
Field-Weighted Citation Impact
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article

Social Media Recruitment as a Potential Trigger for Vulnerability: Multistakeholder Interview Study.

Open Access CRIS of the University of Bern
Social Media in Health Education
article

Social Media Recruitment as a Potential Trigger for Vulnerability: Multistakeholder Interview Study.

article en

Abstract

Background More clinical studies use social media to increase recruitment accrual. 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. We triangulated the expert assessments with the perceptions of 6 patients with hepatitis B regarding social media usage and attitudes relative to their diagnosis.Results Experts perceived social media recruitment as 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 user 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 multichannel recruitment.Conclusions Using social media for clinical study recruitment can mitigate and aggravate potential study participants' vulnerabilities. Researchers should anticipate and address the outlined triggering effects within this study's design and proactively define strategies to overcome them. We suggest practical recommendations to achieve this.

Open Access CRIS of the University of Bern
Institut für Psychologische Psychotherapie (DE)
Quality Education
Openalex Percentile: Top 60%
Social Media in Health Education
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