Defining the "community" in community consultation for emergency research

Findings from the community VOICES study

Deborah Ragin, Edmund Ricci, Rosamond Rhodes, Jennifer Holohan, Margaret Smirnoff, Lynne D. Richardson

Research output: Chapter in Book/Report/Conference proceedingChapterResearchpeer-review

Abstract

This article explores the application of the concept "community consultation" in the context of emergency medical research. Emergency medicine researchers are permitted, by the World Medical Association regulations and in the United States by U.S. Federal Regulations, to conduct emergency medical research on individuals with a life-threatening condition without obtaining their consent or that of their surrogates if certain conditions are met. Among these conditions is the requirement that researchers observe a number of special protections for the participants, including "community consultation and notification" prior to the initiation of such studies. The term "community" is not defined clearly and the process for conducting community consultations is not specified in these regulations. This study explores the feasibility of conducting community consultation in the context of emergency medical research by examining: research participant's definitions of community in New York, the factors that help shape their definitions of community and the people they would authorize to render participation decisions on their behalves. Findings from this study suggest that participants' definitions of community vary as a function of the purpose of the definition and the demographics of the respondents. Most significantly, this study reveals that although respondents can identify potential spokespersons for their communities, these community spokespersons were rarely identified as those who should have decision-making authority in medical emergencies. Finally, this article explores the implications of these findings for the definition of community as it applies to community consultation for emergency medical research.

Original languageEnglish
Title of host publicationEmergency Research Ethics
PublisherTaylor and Francis
Pages185-198
Number of pages14
Volume4
ISBN (Electronic)9781315256634
ISBN (Print)9781409446811
DOIs
StatePublished - 2 Mar 2017

Fingerprint

community research
community
medical research
regulation
medical association
medicine

Keywords

  • Community consultation
  • Defining community
  • Emergency medicine research
  • Research without informed consent
  • USA

Cite this

Ragin, D., Ricci, E., Rhodes, R., Holohan, J., Smirnoff, M., & Richardson, L. D. (2017). Defining the "community" in community consultation for emergency research: Findings from the community VOICES study. In Emergency Research Ethics (Vol. 4, pp. 185-198). Taylor and Francis. https://doi.org/10.4324/9781315256634
Ragin, Deborah ; Ricci, Edmund ; Rhodes, Rosamond ; Holohan, Jennifer ; Smirnoff, Margaret ; Richardson, Lynne D. / Defining the "community" in community consultation for emergency research : Findings from the community VOICES study. Emergency Research Ethics. Vol. 4 Taylor and Francis, 2017. pp. 185-198
@inbook{542d0355491f4540a48250424120fd75,
title = "Defining the {"}community{"} in community consultation for emergency research: Findings from the community VOICES study",
abstract = "This article explores the application of the concept {"}community consultation{"} in the context of emergency medical research. Emergency medicine researchers are permitted, by the World Medical Association regulations and in the United States by U.S. Federal Regulations, to conduct emergency medical research on individuals with a life-threatening condition without obtaining their consent or that of their surrogates if certain conditions are met. Among these conditions is the requirement that researchers observe a number of special protections for the participants, including {"}community consultation and notification{"} prior to the initiation of such studies. The term {"}community{"} is not defined clearly and the process for conducting community consultations is not specified in these regulations. This study explores the feasibility of conducting community consultation in the context of emergency medical research by examining: research participant's definitions of community in New York, the factors that help shape their definitions of community and the people they would authorize to render participation decisions on their behalves. Findings from this study suggest that participants' definitions of community vary as a function of the purpose of the definition and the demographics of the respondents. Most significantly, this study reveals that although respondents can identify potential spokespersons for their communities, these community spokespersons were rarely identified as those who should have decision-making authority in medical emergencies. Finally, this article explores the implications of these findings for the definition of community as it applies to community consultation for emergency medical research.",
keywords = "Community consultation, Defining community, Emergency medicine research, Research without informed consent, USA",
author = "Deborah Ragin and Edmund Ricci and Rosamond Rhodes and Jennifer Holohan and Margaret Smirnoff and Richardson, {Lynne D.}",
year = "2017",
month = "3",
day = "2",
doi = "10.4324/9781315256634",
language = "English",
isbn = "9781409446811",
volume = "4",
pages = "185--198",
booktitle = "Emergency Research Ethics",
publisher = "Taylor and Francis",

}

Ragin, D, Ricci, E, Rhodes, R, Holohan, J, Smirnoff, M & Richardson, LD 2017, Defining the "community" in community consultation for emergency research: Findings from the community VOICES study. in Emergency Research Ethics. vol. 4, Taylor and Francis, pp. 185-198. https://doi.org/10.4324/9781315256634

Defining the "community" in community consultation for emergency research : Findings from the community VOICES study. / Ragin, Deborah; Ricci, Edmund; Rhodes, Rosamond; Holohan, Jennifer; Smirnoff, Margaret; Richardson, Lynne D.

Emergency Research Ethics. Vol. 4 Taylor and Francis, 2017. p. 185-198.

Research output: Chapter in Book/Report/Conference proceedingChapterResearchpeer-review

TY - CHAP

T1 - Defining the "community" in community consultation for emergency research

T2 - Findings from the community VOICES study

AU - Ragin, Deborah

AU - Ricci, Edmund

AU - Rhodes, Rosamond

AU - Holohan, Jennifer

AU - Smirnoff, Margaret

AU - Richardson, Lynne D.

PY - 2017/3/2

Y1 - 2017/3/2

N2 - This article explores the application of the concept "community consultation" in the context of emergency medical research. Emergency medicine researchers are permitted, by the World Medical Association regulations and in the United States by U.S. Federal Regulations, to conduct emergency medical research on individuals with a life-threatening condition without obtaining their consent or that of their surrogates if certain conditions are met. Among these conditions is the requirement that researchers observe a number of special protections for the participants, including "community consultation and notification" prior to the initiation of such studies. The term "community" is not defined clearly and the process for conducting community consultations is not specified in these regulations. This study explores the feasibility of conducting community consultation in the context of emergency medical research by examining: research participant's definitions of community in New York, the factors that help shape their definitions of community and the people they would authorize to render participation decisions on their behalves. Findings from this study suggest that participants' definitions of community vary as a function of the purpose of the definition and the demographics of the respondents. Most significantly, this study reveals that although respondents can identify potential spokespersons for their communities, these community spokespersons were rarely identified as those who should have decision-making authority in medical emergencies. Finally, this article explores the implications of these findings for the definition of community as it applies to community consultation for emergency medical research.

AB - This article explores the application of the concept "community consultation" in the context of emergency medical research. Emergency medicine researchers are permitted, by the World Medical Association regulations and in the United States by U.S. Federal Regulations, to conduct emergency medical research on individuals with a life-threatening condition without obtaining their consent or that of their surrogates if certain conditions are met. Among these conditions is the requirement that researchers observe a number of special protections for the participants, including "community consultation and notification" prior to the initiation of such studies. The term "community" is not defined clearly and the process for conducting community consultations is not specified in these regulations. This study explores the feasibility of conducting community consultation in the context of emergency medical research by examining: research participant's definitions of community in New York, the factors that help shape their definitions of community and the people they would authorize to render participation decisions on their behalves. Findings from this study suggest that participants' definitions of community vary as a function of the purpose of the definition and the demographics of the respondents. Most significantly, this study reveals that although respondents can identify potential spokespersons for their communities, these community spokespersons were rarely identified as those who should have decision-making authority in medical emergencies. Finally, this article explores the implications of these findings for the definition of community as it applies to community consultation for emergency medical research.

KW - Community consultation

KW - Defining community

KW - Emergency medicine research

KW - Research without informed consent

KW - USA

UR - http://www.scopus.com/inward/record.url?scp=85061594675&partnerID=8YFLogxK

U2 - 10.4324/9781315256634

DO - 10.4324/9781315256634

M3 - Chapter

SN - 9781409446811

VL - 4

SP - 185

EP - 198

BT - Emergency Research Ethics

PB - Taylor and Francis

ER -

Ragin D, Ricci E, Rhodes R, Holohan J, Smirnoff M, Richardson LD. Defining the "community" in community consultation for emergency research: Findings from the community VOICES study. In Emergency Research Ethics. Vol. 4. Taylor and Francis. 2017. p. 185-198 https://doi.org/10.4324/9781315256634