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Open Access Highly Accessed Research

Yet they failed to do so: recommendations based on the experiences of NAOMI research survivors and a call for action

Susan Boyd* and NAOMI Patients Association

Author Affiliations

Studies in Policy & Practice, University of Victoria, PO Box 1700 STN CSC, Victoria, BC, V8W 2Y2, Canada

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Harm Reduction Journal 2013, 10:6  doi:10.1186/1477-7517-10-6

Published: 18 April 2013

Abstract

Background

This article highlights the experiences of a unique group. In January 2011, Dave Murray organized a group of participants from the North American Opiate Medication Initiative (NAOMI) heroin-assisted treatment clinical trials from 2005 to 2008 in the Downtown Eastside of Vancouver (DTES), B.C., Canada. The NAOMI Patients Association (NPA) is an independent group that currently meets every Saturday in the DTES. Currently, all members of the NPA are former participants in the heroin stream of the clinical trial. The NPA offers support, education, and advocacy to its members.

Methods

Drawing on brainstorming sessions and focus groups that were conducted in the summer of 2011, this paper highlights the experiences of NPA members in their own words.

Results

The findings provide a lens to understand how becoming a research subject for the NAOMI trial impacted the lives of NPA members, both positive and negative. The NPA members discuss ethics, consent, recommendations for future HAT programs and studies, and ongoing advocacy.