The voices of people living with HIV: Positive Perspectives 1 and 2
Understanding the experiences of people living with HIV is essential to create policy and services to meet their needs. In 2017, the Positive Perspectives 1 Survey was carried out in nine countries and included 1,111 people living with HIV. It highlighted the challenges people living with HIV face and the impacts of HIV and treatment on their daily lives.
Positive Perspectives 2 builds on the work of the first study. It includes the opinions of 2,389 people living with HIV from across 25 countries.
It explores how people living with HIV rate their own health, how living with HIV impacts their lives and affects their outlook for the future, as well as their interactions and relationships with healthcare providers and their experiences with antiretroviral treatment (ART).
Shaping future care
Watch these short videos from members of the Advisory Committee talking about the importance of Positive Perspectives:
Brent Allan
Erika Castellanos
Bruce Richman
Read the Positive Perspectives report foreword by Garry Brough
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Panel 1
The way people living with HIV are cared for is evolving. Thanks to innovations in ART, HIV is now a long-term, treatable health condition and most people living with HIV are living longer, healthier lives.
While there is still more work to be done to ensure universal access to ART, significant progress has been made in reaching the UNAIDS 90–90–90 targets set for 2020:
As HIV care has evolved, the focus has moved away from surviving HIV to living and ageing well with HIV, with improved quality of life (QoL) being the desired goal. Long-term QoL is becoming a critical priority in the care of people living with HIV, a target that has become known as the ‘fourth 90.’
However, few international HIV studies capture the experiences of people living with HIV beyond viral suppression. The Positives Perspectives study, Wave 2 is one of the largest, global, HIV patient-reported outcomes studies to date. Staying true to the goal of meaningful involvement of people living with HIV in HIV care from the Denver Principles, the Positive Perspectives research provides perspectives and opinions from a diverse group of people living with HIV across the world.
Patient reported data from the Positive Perspectives study provide first-hand information about how care and treatment affect the health and wellbeing of people living with HIV beyond viral suppression and offer in-depth insights into the challenges that impact the quality of life of people living with HIV.
As most people living with HIV now live longer, a collaborative and holistic approach to HIV care that facilitates ongoing communication between people living with HIV and healthcare professionals can help improve health outcomes and quality of life.
Garry Brough
Lead for Peer Learning, Partnerships & Policy, Positively UK; Co-Founder Bloomsbury Patients Network; Community Representative for NHIVNA, London HIV Clinical Forum and London Fast Track City Leadership Group
Study methodology
Positive Perspectives is an international, cross-sectional study. In total, 2,389 people living with HIV aged 18–84 from 25 countries participated:
North America
USA (n=400), Canada (n=120)
Central and South America
Mexico (n=63), Brazil (n=58), Argentina (n=50), Chile (n=50)
Europe
UK (n=123), France (n=120), Germany (n=120), Italy (n=120), Spain (n=120), Portugal (n=60), Switzerland (n=55), The Netherlands (n=51), Republic of Ireland (n=50), Austria (n=50), Belgium (n=50), Poland (n=50)
Africa
South Africa (n=179)
Eurasia
Russia (n=150)
Asia Pacific
Australia (n=120), Japan (n=75), Taiwan (n=55), China (n=50), South Korea (n=50)
Who took part in the study?
The study was conducted between April 2019 and January 2020. Some data included in this report are based on an interim analysis carried out in September 2019 including 2,112 participants; most of this report is based on the full sample size of 2,389 participants.
The study was run by ViiV Healthcare in collaboration with an international, multi-disciplinary Advisory Committee. This expert panel included people living with HIV, representatives from HIV support groups and HIV physicians.
The Advisory Committee was instrumental to the development of the study themes, as well as being involved in the analysis and communication of the Positive Perspectives results.
Brent Allan
Senior Advisor
Policy and Programs for ICASO based in Toronto Canada
Co-founder
Positive Leadership Development Institute Australia/New Zealand
Pholokgolo Ramothwala
Director and founder
Positive Convention
Journalist and Author
Giulio Maria Corbelli
Community Engagement Project Manager
HVTN
Member
EATG, ECAB & Policy Working Group
Member Board of Directors
PLUS, Italian network for LGBT PLHIV
Freelance Journalist
Marvelous Muchenje
Manager Community
Relations & Communications
ViiV Healthcare, Canada
Erika Castellanos
Director of Programs
GATE, Member Communities, Rights and Gender Advisory Group
Member of the Board
Global Fund
Member
ViiV Positive Action Strategic Advisory Council
Bruce Richman
Founding Executive Director
Prevention Access Campaign
Founder
U=U
Siegfried Schwarze
Member
EATG & ECAB
Member
DAGNÄ & DAIG
Anton Eremin
Infectious Diseases Clinician & Researcher
Moscow Regional AIDS Center
HIV Consultant
AIDS.CENTER Foundation
Keita Kambara
Member
Japanese Network of People living with HIV/AIDS (JANP)
HIV Consultant
AIDS.CENTER Foundation
Marta McBritton
President and Co-Founder
NGO Barong Cultural Institute
Educator in behavioural intervention activities
Gary Brough
Lead for Peer Learning, Partnerships & Policy
Positively UK
Co-founder
Bloomsbury Patients Network
Community Representative
NHIVNA
London HIV Clinical Forum
London Fast Track City Leadership Group
Diego Garcia Morcillo
Director
Sevilla Checkpoint
Member
EATG Fast Track City Leadership Group
David Hardy
Adjunct Professor of Medicine
Division of Infectious Diseases at John Hopkins University School of Medicine
Chair of the Board
HIVMA
AAHIVM
Pascal Pugliese
President of COREVIH Paca Est (Coordination of the Fight Against HIV and STIs)
Division of Infectious Diseases at John Hopkins University School of Medicine
Hospital Practitioner
Clinical Virology Unit, CHU de Nice
Download the results report
If you would like to find out more about Positive Perspectives study, you can download the full results report here.
