TY - JOUR
T1 - Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused science
AU - Lau, Jillian S.Y.
AU - Smith, Miranda Z.
AU - Allan, Brent
AU - Dubé, Karine
AU - Young, A. Toni
AU - Power, Jennifer
N1 - Funding Information:
The INSPIRE project was funded by a small grant from the Melbourne HIV Cure Consortium . We are grateful to all people who participated in the INSPIRE workshop which informed the findings presented in this paper. In particular, we are grateful to people living with HIV who shared their insight and lived experience to inform this work. Roslyn Le Gautier assisted in the development of this project.
Publisher Copyright:
© 2020 The Author(s)
PY - 2020/11
Y1 - 2020/11
N2 - Introduction: Involving affected communities and people living with HIV (PLHIV) in HIV cure-focused clinical trials has ethical and practical benefits. However, there can be barriers to meaningful involvement of ‘lay people’ in scientific research meaning community consultation is often limited or tokenistic. This paper reports on an Australian project, the INSPIRE project (Improve, Nurture and Strengthen education, collaboration, and communication between PLHIV and Researchers), which aimed to explore barriers and enablers to enactment of the principles of meaningful involvement of PLHIV (MIPA) and affected communities in HIV cure-focused research. Methods: The project involved a workshop attended by 40 stakeholders involved in HIV care, research or advocacy including PLHIV, community organizations, basic scientists, and clinicians. The workshop involved a facilitated discussion about community involvement in a hypothetical HIV cure-focused clinical trial. Data were collected through notetaking and video recordings. Qualitative, thematic analysis was undertaken to organize the data and identify core themes related to MIPA. Results: Workshop discussions revealed community stakeholders often feel their involvement in HIV clinical research is undervalued, evidenced by limited financial remuneration and minimal capacity to influence the research design or processes. Building long-term, formal and informal relationships between community organizations, PLHIV, researchers and research teams or laboratories was identified as a strategy to support MIPA at all stages of a clinical trial, from design to dissemination of findings. Conclusions: Enacting MIPA principles in HIV cure-focused research requires a better understanding of the potential to improve research outcomes and ensure quality in the research process.
AB - Introduction: Involving affected communities and people living with HIV (PLHIV) in HIV cure-focused clinical trials has ethical and practical benefits. However, there can be barriers to meaningful involvement of ‘lay people’ in scientific research meaning community consultation is often limited or tokenistic. This paper reports on an Australian project, the INSPIRE project (Improve, Nurture and Strengthen education, collaboration, and communication between PLHIV and Researchers), which aimed to explore barriers and enablers to enactment of the principles of meaningful involvement of PLHIV (MIPA) and affected communities in HIV cure-focused research. Methods: The project involved a workshop attended by 40 stakeholders involved in HIV care, research or advocacy including PLHIV, community organizations, basic scientists, and clinicians. The workshop involved a facilitated discussion about community involvement in a hypothetical HIV cure-focused clinical trial. Data were collected through notetaking and video recordings. Qualitative, thematic analysis was undertaken to organize the data and identify core themes related to MIPA. Results: Workshop discussions revealed community stakeholders often feel their involvement in HIV clinical research is undervalued, evidenced by limited financial remuneration and minimal capacity to influence the research design or processes. Building long-term, formal and informal relationships between community organizations, PLHIV, researchers and research teams or laboratories was identified as a strategy to support MIPA at all stages of a clinical trial, from design to dissemination of findings. Conclusions: Enacting MIPA principles in HIV cure-focused research requires a better understanding of the potential to improve research outcomes and ensure quality in the research process.
KW - Clinical trial
KW - Community
KW - HIV
KW - HIV cure
KW - People living with HIV
KW - Social sciences
KW - Workshop
UR - http://www.scopus.com/inward/record.url?scp=85093927349&partnerID=8YFLogxK
U2 - 10.1016/j.jve.2020.100018
DO - 10.1016/j.jve.2020.100018
M3 - Article
C2 - 33251026
AN - SCOPUS:85093927349
SN - 2055-6640
VL - 6
JO - Journal of Virus Eradication
JF - Journal of Virus Eradication
IS - 4
M1 - 100018
ER -