Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused science
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 t...
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2020-11-01
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doaj-ef7b7e06e1534299ae21bda3cb1049132021-05-05T04:07:30ZengElsevierJournal of Virus Eradication2055-66402020-11-0164100018Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused scienceJillian S.Y. Lau0Miranda Z. Smith1Brent Allan2Karine Dubé3A. Toni Young4Jennifer Power5Alfred Health and Monash University, Melbourne, AustraliaPeter Doherty Institute for Infection and Immunity, University of Melbourne, Melbourne, AustraliaInternational Council of AIDS Service Organizations, Toronto, CanadaGillings School of Global Public Health, University of North Carolina, Chapel Hill, USADistrict of Columbia Centre for AIDS Research, Community Education Group, Washington D.C., USAAustralian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Australia; Corresponding author. Building NR6, La Trobe University Melbourne Campus, Melbourne, 3086, Australia.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.http://www.sciencedirect.com/science/article/pii/S2055664020314679HIVHIV cureWorkshopClinical trialCommunityPeople living with HIV |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Jillian S.Y. Lau Miranda Z. Smith Brent Allan Karine Dubé A. Toni Young Jennifer Power |
spellingShingle |
Jillian S.Y. Lau Miranda Z. Smith Brent Allan Karine Dubé A. Toni Young Jennifer Power Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused science Journal of Virus Eradication HIV HIV cure Workshop Clinical trial Community People living with HIV |
author_facet |
Jillian S.Y. Lau Miranda Z. Smith Brent Allan Karine Dubé A. Toni Young Jennifer Power |
author_sort |
Jillian S.Y. Lau |
title |
Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused science |
title_short |
Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused science |
title_full |
Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused science |
title_fullStr |
Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused science |
title_full_unstemmed |
Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused science |
title_sort |
time for revolution? enhancing meaningful involvement of people living with hiv and affected communities in hiv cure-focused science |
publisher |
Elsevier |
series |
Journal of Virus Eradication |
issn |
2055-6640 |
publishDate |
2020-11-01 |
description |
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. |
topic |
HIV HIV cure Workshop Clinical trial Community People living with HIV |
url |
http://www.sciencedirect.com/science/article/pii/S2055664020314679 |
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