20th International AIDS Conference - Melbourne, Australia


TUSY02 Public Engagement with HIV Science
  Symposia Session
Venue: Melbourne Room 2
Time: 22.07.2014, 11:00 - 12:30
Co-Chairs: Judith Auerbach, United States
Veronica Noseda, France

There is a long pathway between demonstrating efficacy in clinical trials of new anti-HIV technologies and proving effectiveness in “real world” settings. That pathway is paved with combinations of technological, behavioural, social, political, and economic factors that ultimately play out in the actions of individuals to take up (or resist taking up) HIV prevention and treatment methods and incorporate them into their daily lives. To a great extent, whether and how this occurs is a reflection of public engagement in HIV/AIDS science—from basic perceptions and attitudes about biomedical research; meanings people give to products, technologies, their bodies, and their relationships; participation in and knowledge of the outcomes of research; and communication about scientific processes and outcomes. This session will examine how public engagement in science has evolved in the realm of HIV, including issues of inclusion, exclusion, exploitation and benefit, and what constitutes sound scientific research and actionable evidence.
11:00
TUSY0201
Webcast
Introduction
J. Auerbach, United States

11:05
TUSY0202
Powerpoint
Webcast
Stakeholder engagement and good participatory practices for global clinical trials: developing tools and models for the 21st century
K. MacQueen, United States

11:20
TUSY0203
Powerpoint
Webcast
The continuum of participation in research: From HIV PrEP prevention to care. Seven years of the iPrEx trial
P. Goicochea, Peru

11:35
TUSY0204
Powerpoint
Webcast
Engagement in practice: how to grasp what is made of scientific developments
K. Race, Australia

12:05
TUSY0206
Webcast
Q&A

12:25
TUSY0206
Webcast
Closing remarks
V. Noseda, France

Powerpoints presentations
Stakeholder engagement and good participatory practices for global clinical trials: developing tools and models for the 21st century - Kathleen MacQueen

The continuum of participation in research: From HIV PrEP prevention to care. Seven years of the iPrEx trial - Pedro Goicochea
The continuum of participation in research: From HIV PrEP prevention to care. Seven years of the iPrEx trial - Pedro Goicochea
The continuum of participation in research: From HIV PrEP prevention to care. Seven years of the iPrEx trial - Pedro Goicochea

Engagement in practice: how to grasp what is made of scientific developments - Kane Race



Rapporteur report

Track D report by Carlos F. Caceres


This session was focused on the public (community) engagement in science, with particular emphasis on community participation in biomedical HIV prevention trials such as those concerned with Pre-Exposure Prophylaxis and Early Treatment for Prevention.

After introductory remarks from the panel chairs, Pedro Goicochea provided an account of interactions with the community and their involvement in the iPrEx trial focused on MSM and transgender women in several countries, and particularly in Peru and Ecuador. He also presented data from a qualitative appraisal of ongoing participants in iPrEx OLE regarding their motivations to either be on PrEP (e.g. trust in the drug, access to care, reimbursements) or off-PrEP (secondary effects, lack of need given condom use, post-trial access not assured).

Then, Cate McQueen presented an in-depth analysis of issues that historically emerged in the PrEP trials, including the first generation of such trials, some of them cancelled. She identified a number of concerns that have emerged in providers and community members alike, including low adherence and potential resistance, high cost, medicalization of prevention, but also potential stereotyping, stigma and discrimination of potential users (i.e. ‘Truvada whores’).

Finally, focusing on early treatment for prevention, Kane Race questioned the presumed hyper-complexity of biomedical prevention discourse, and posited that communities may produce rather complex knowledge about HIV themselves, and are capable of participating in productive dialogue about prevention.

This was a rich session with important insights about the possibilities and channels of public (community) engagement in HIV  Prevention and Care Science.




   

    The organizers reserve the right to amend the programme.