Lessons learned about publication of results of community surveys when regulatory oversight has not occurred

Abstract

Background: We conducted a survey in an online forum without prior IRB approval which yielded information we wanted to share with the medical community. We sought approaches to ethically publish the survey's results. Objective: Address the ethical issues raised by considering publication of community forum perspectives without prior regulatory oversight or written informed consent. Methods: A research ethics consultation identified two approaches: 1) assessing community perspectives in general on academic publication and 2) obtaining a collaborative ethics consultation to promote diversity in identifying ethical considerations. Results: Most community respondents were in favor of the concept of publication, noting the value of patient perspectives to improve communication, clinical relationships, and care. Considerations identified by the Collaborative included whether publication is likely to have value, would cause harm to participants, and whether publication would threaten trust. The role of formal oversight was reviewed. Conclusions: There is a reasonable ethical justification for publishing insights gained from a community forum based on evidence of community support for, and value to the community of, the publication, even when prior regulatory oversight was not obtained. Proactive strategies can be applied to obviate this issue.

Keywords

• Patient experience
• Patient engagement
• Qualitative methods
• Ethics