title: Systematic review and metasummary of attitudes toward research in emergency medical conditions.
abstract: Emergency departments are challenging research settings, where truly informed consent can be difficult to obtain. A deeper understanding of emergency medical patients' opinions about research is needed. We conducted a systematic review and meta-summary of quantitative and qualitative studies on which values, attitudes, or beliefs of emergent medical research participants influence research participation. We included studies of adults that investigated opinions toward emergency medicine research participation. We excluded studies focused on the association between demographics or consent document features and participation and those focused on non-emergency research. In August 2011, we searched the following databases: MEDLINE, EMBASE, Google Scholar, Scirus, PsycINFO, AgeLine and Global Health. Titles, abstracts and then full manuscripts were independently evaluated by two reviewers. Disagreements were resolved by consensus and adjudicated by a third author. Studies were evaluated for bias using standardised scores. We report themes associated with participation or refusal. Our initial search produced over 1800 articles. A total of 44 articles were extracted for full-manuscript analysis, and 14 were retained based on our eligibility criteria. Among factors favouring participation, altruism and personal health benefit had the highest frequency. Mistrust of researchers, feeling like a 'guinea pig' and risk were leading factors favouring refusal. Many studies noted limitations of informed consent processes in emergent conditions. We conclude that highlighting the benefits to the participant and society, mitigating risk and increasing public trust may increase research participation in emergency medical research. New methods for conducting informed consent in such studies are needed.
authors.affiliation: Division of Emergency Medicine, Department of Surgery, Duke University, Durham, North Carolina, USA.
authors.forename: Alexander T
authors.initials: AT
authors.lastname: Limkakeng
authors.affiliation: Department of Surgery, Duke University, Durham, North Carolina, USA.
authors.forename: Lucas Lentini Herling
authors.initials: LL
authors.lastname: de Oliveira
authors.affiliation: Department of Surgery, Duke University, Durham, North Carolina, USA.
authors.forename: Tais
authors.initials: T
authors.lastname: Moreira
authors.affiliation: Department of Surgery, Duke University, Durham, North Carolina, USA.
authors.forename: Amruta
authors.initials: A
authors.lastname: Phadtare
authors.affiliation: Department of Surgery, Duke University, Durham, North Carolina, USA.
authors.forename: Clarissa
authors.initials: C
authors.lastname: Garcia Rodrigues
authors.affiliation: Division of Emergency Medicine, Department of Surgery, Duke University, Durham, North Carolina, USA.
authors.forename: Michael B
authors.initials: MB
authors.lastname: Hocker
authors.affiliation: Department of Pediatrics, Trent Center for Bioethics, Humanities, and Medical History, Duke University, Durham, North Carolina, USA.
authors.forename: Ross
authors.initials: R
authors.lastname: McKinney
authors.affiliation: Department of Medicine, Durham Veterans Affairs Medical Center, Duke University, Durham, North Carolina, USA.
authors.forename: Corrine I
authors.initials: CI
authors.lastname: Voils
authors.affiliation: Department of Surgery, Duke University, Durham, North Carolina, USA.
authors.forename: Ricardo
authors.initials: R
authors.lastname: Pietrobon
mesh_terms: D000328:Adult; D000533:Altruism; D002986:Clinical Trials as Topic / Q000941:ethics*; D004635:Emergency Medicine / Q000941:ethics*; D005069:Evaluation Studies as Topic; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D011639:Public Opinion; D035842:Research Subjects / Q000523:psychology*; D012306:Risk; D035502:Trust / Q000523:psychology
keywords: Informed Consent; Patient perspective; Research Ethics; Research on Special Populations