[Moving from patient information to involvement in associations for people living with HIV participating in a medical study in Senegal - ANRS cohort 1215]

Bull Soc Pathol Exot. 2014 Oct;107(4):286-91. doi: 10.1007/s13149-014-0377-2. Epub 2014 Jun 27.
[Article in French]

Abstract

Based on work in anthropology and the experience of the implementation of a project on ethics, this article describes the contributions of the ANRS 1215 cohort to information of participants and community involvement in research. It draws a parallel between the development of information methods and the roles gradually held by PLWA individually or collectively. From 1998 to 2011, the PLWA have diversified theirs activities (psycho-social support, administrative tasks, ethical watch function) and have contributed to improve the information of participants. This involvement of PLWHIV in ethics, which belongs to a long-term process, is analyzed through social, political, economical and ethical evolutions, both at national and international level.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Biomedical Research
  • Clinical Trials as Topic
  • Cohort Studies
  • Community Health Services*
  • HIV Infections / epidemiology*
  • HIV-1
  • Health Behavior
  • Humans
  • Information Seeking Behavior
  • Patient Education as Topic*
  • Patient Participation / statistics & numerical data*
  • Senegal / epidemiology
  • Social Support
  • Workforce