Online community discourse on spinal cord injury research.

Abstract

Background: Public perceptions of spinal cord injury (SCI) research can influence trust in scientific advancements and therapeutic interventions. Social media is a useful tool to provide insight into these perceptions and related values. This study examines comments to posts pertaining to SCI research reports on a widely used social media platform.

Method: We used search term 'spinal cord injury' to collect posts and associated top-level comments spanning 2016-2023 from Reddit. Posts were included if they contained research reports on one of the following SCI interventions: biologic and synthetic materials; devices and technologies; physical and behavioral interventions; and pharmacological treatments. Each unique comment per Reddit post was coded for user self-identification, format, intervention, topic, and tone.

Results: We retrieved and analyzed 994 comments from 24 posts. Key topics of interest were: scientific progress (52%, 514/994), study details (30%, 301/994), and ethical implications (24%, 237/994) across interventions. Comments were generally neutral in tone. Fifty-four comments were made by users who self-identified as persons with lived experience of a spinal cord-related condition. Ethics-related comments (237/994) were focused on the themes of access (35%, 84/237) and beneficence (24%, 58/237).

Conclusion: The SCI community is actively using the social media platform Reddit to seek information about research and its ethical dimensions. Across users, a significant proportion of comments are on research progress, ethics and study information. The largest proportion of ethics-focused comments by self-identifiers are on agency, and then equally on access, values, and resilience; ethics-related comments by non-self-identifiers focus on access, and beneficence.