How do patients feel about taking part in clinical trials in emergency care?

Background There is little in-depth research into how patients feel about emergency medical trials, and what influences these feelings.

Objectives To investigate patients’ feelings on taking part in emergency medical research, particularly trials conducted without prospective consent.

Methods Seventeen inpatients, all recently admitted with a medical emergency, were interviewed. Questions focused on feelings on taking part in hypothetical trials, particularly trials conducted with deferred consent.

Results Five main themes were identified. Level of trust in the medical profession—high levels of trust tended to correlate with willingness to participate in trials. Previous bad healthcare experiences tended to diminish trust. Concerns for personal well-being—patients identified a conflict between aversion to unknown side effects and desire for access to newer and potentially better treatments. Some would be less inclined to participate in research if they were severely unwell, some more so. Altruism—many cited the importance of helping to advance medical knowledge and of ‘giving back to the health service’. Concerns over autonomy—some felt that deferred consent was a violation of personal autonomy. Uncertainty—many patients seemed to struggle to understand the more complex concepts discussed.

Conclusions Patients are broadly trusting, and open to participating in emergency medical trials, but want to be kept as informed as possible throughout the process. Willingness may be improved by providing more complete explanations, although this may be limited by the complexity of relevant concepts. Good communication and improved public understanding of clinical trials would likely increase acceptance of emergency care research.