Community meetings for emergency research community consultation

To survey attendees at community meetings for an emergency research protocol and determine whether these meetings aid participants' understanding and decision to support the proposed emergency research.

Postmeeting questionnaire.

Three community meetings for the PolyHeme study in San Antonio area.

One hundred fifty community meeting attendees.

PolyHeme research team representatives made a study presentation concerning exception to informed consent regulations. In addition, institutional review board (IRB) members attended these meetings and made a separate presentation about the IRB approval of research and the exception to informed consent in emergency research. The IRB members requested attendees to voluntarily complete an additional Community Consultation Survey assessing demographics, community meeting satisfaction, and impact of the community meeting on their attitudes toward emergency research studies.

Feedback to the PolyHeme investigators with their validation questions indicated that 35% of the respondents objected to research without prior consent, but 82% gave approval for the study in the local community; 137 attendees completed the additional Community Consultation Survey. The average score on the adequacy of information provided about the PolyHeme study was 0.58 on a 5-point Likert scale (-2 to +2). Adequacy of IRB background information on human subjects research received an average score of 0.56, and the overall clarity of the information on community consultation was 0.91. Although 80% of respondents felt there was a potential benefit from PolyHeme, <67% would either want to participate or enroll their family members with or without prior consent.

The majority of community meeting attendees understand basic concepts and regulations of emergency research without prior consent. Despite an 82% concurrence with the study in their community, approximately 30% of persons would not willingly choose to participate in emergency research or provide consent for their family members despite knowledge about the process.