Public perception of emergency research: a questionnaire

Background and objective: Emergency research (e.g. into cardiac arrest or head injury) needs to start immediately, often before the patient, or relative, can give consent. A recent European Directive will prevent or severely limit emergency research. Little is known about the public view of emergency research. Methods: Patients attending the outpatient department of a university teaching hospital were invited to complete a self-administered questionnaire. Research Ethics Committee approval was obtained and participants gave written informed consent. Results: Three hundred and five of 362 respondents (84%) thought emergency research should start in the absence of consent but should be obtained as soon as possible from the nearest relative (82%) or the patient (90%). If consent was refused 62% felt the data could still be used, as did 81% if the patient died. Despite 62% approving of public meetings to publicize emergency research only 35176 would attend one. A previously recommended list of preconditions was endorsed: no other consentable group (47%); advance consent impossible (5596); unable to delay treatment (73%); consent to be obtained as soon as possible (88%); an adequately designed protocol (74%); Ethics Committee approval (71%); patient may benefit (85%); future patients may benefit (92%) and that the treatment was necessary and could not be delayed (91%). Conclusions: Emergency research must occur to improve the outcome from life-threatening illness or injury. The majority of people are aware of the importance of this research and that the normal rules of consent are not applicable. Alternative methods of recruitment need to be investigated.