NAPWHA staff, board and special representatives aim to ensure the meaningful involvement of people living with HIV in a range of HIV-related research activities across Australia (and some internationally). NAPWHA plays a key role through contributing to research advisory committees, reference groups and as representatives for people living with HIV on specific research studies.
Research and studies of which NAPWHA represents in
NAPWHA’s input covers areas of; clinical research, behavioural research, and social research into aspects of living with HIV. One of our activities involves interpreting and circulating relevant HIV research outcomes and findings to HIV positive people via a range of media loops and through the network of NAPWHA member organisations.
NAPWHA is currently representing and involved in the following research:
- Australian Centre for HIV and Hepatitis Virology Research (ACH2) – Scientific Advisory Committee
- Australian Centre for HIV and Hepatitis Virology Research (ACH2) – Immunovirology Research Network (IVRN)
- Australian Centre for HIV, Hepatitis and Virology Research – Scientific Advisory Board
- Australian Research Centre for Sex Health and Society, La Trobe University – HIV Futures 9 study
- Australian Collaboration for Coordinated Enhanced Sentinel Surveillance (ACCESS)
- Centre for Social Research in Health, UNSW – PAART Study (Predictors of Adherence to Antiretroviral Therapy)
- Centre for Social Research in Health, UNSW – Stigma Indicators Monitoring Project – Stigma Indicators Advisory Committee
- Centre for Social Research in Health, UNSW – Scientific Advisory Committee
- Centre for Human Rights Education, Curtin University – Reducing health disparities for culturally and linguistically diverse peoples
- Delaney AIDS Research Enterprise Community Advisory Board
- The Kirby Institute, UNSW – CEASE Study (Control and Elimination within Australia of Hepatitis C from PLHIV)
- The Kirby Institute, UNSW – RISE Study (Recently Diagnosed and the Impact of Support of the Experience of HIV)
- The Kirby Institute, UNSW – SPANC (Study of the Prevention of Anal Cancer)
- The Kirby Institute, UNSW – PAWS (Prospective Ageing Well Study)
- HIV Cure Community Partnership (HCCP)
- HIV Cure Digital Think Tank
- INSIGHT (International Network for Strategic Initiatives in HIV Trials) – Community Advisory Board
- Monash University – Healthmap Study – Steering Committee
Examples of recently published research involving NAPWHA representatives:
Rule, J., Ellard, J.,& Cogle, A. (2018). Linkage to Care Project: Report Identifying the Barriers and Facilitators for People living with HIV to Treatment and Care. National Association of People with HIV Australia.
Siefried, K. J., Mao, L., Cysique, L. A., Rule, J., Giles, M. L., Smith, D. E., & Bloch, M. (2018). Concomitant medication polypharmacy, interactions and imperfect adherence are common in Australian adults on suppressive antiretroviral therapy. AIDS (London, England), 32(1), 35.
Brown, G., Reeders, D., Cogle, A., Madden, A., Kim, J., & O’Donnell, D. (2018). A Systems Thinking Approach to Understanding and Demonstrating the Role of Peer-Led Programs and Leadership in the Response to HIV and Hepatitis C: Findings from the W3 Project. Frontiers in public health, 6.
Brown, G., Mikołajczak, G., Lyons, A., Power, J., Drummond, F., Cogle, A., & O’Connor, S. (2018). Development and validation of PozQoL: a scale to assess quality of life of PLHIV. BMC public health, 18(1), 527.
RISE stands for ‘Recent Diagnosis and the Impact of Support on Experiences of HIV’. Run by The Kirby Institute, UNSW, Sydney, RISE is exploring people’s experiences of being diagnosed with HIV and the changes in their lives following their diagnosis. What’s involved? Simply complete an online survey twice a year. The survey includes detailed questions about your experience of being diagnosed with HIV, and your life since then. Your experiences are important in helping develop & improve HIV support services for the future.
The study is currently recruiting: Visit the RISE website
HIV FUTURES Study
HIV Futures 9, published in September 2019, is a study of quality of life among people living with HIV (PLHIV) in Australia that forms part of a series of studies that have been running since 1997 by The Australian Research Centre in Sex, Health and Society (ARCSHS) of La Trobe University. NAPWHA is one of the project collaborators.
In each iteration of the HIV Futures study, a cross sectional survey of the Australian population of PLHIV is conducted. Data were collected for HIV Futures 9 from December 2018 until May 2019. Participants completed a questionnaire using a self-complete online or hardcopy form. The survey instrument comprised 148 questions related to quality of life, financial security, health, well-being, treatment, support, sex, relationships, HIV-related stigma, and ageing. Download HIV Futures 9: quality of life among people living with HIV in Australia [PDF]
NAPWHA was a project collaborator for the CEASE Study (Control and Elimination within AuStralia of HEpatitis C from people living with HIV) run by Kirby Institute, UNSW Sydney. Over 400 participants are involved in the study throughout NSW, QLD, VIC and SA. Most of the participants in CEASE are gay or bisexual men (80%), who have injected drugs at some point in their lives (79%). The average age of participants was 49 years. Participants attended a Follow Up #1 visit in 2018 and will be invited to attend Follow Up #2 in 2020.
By 2015, an estimated 230,000 Australians were living with hepatitis C. Of the approximately 25,000 living with HIV, around 10% were also living with hepatitis C. The CEASE study looks at highly effective treatments, rapid uptake of treatment & low rates of reinfection to tackle hep C. Direct-acting antivirals (DAA) for hepatitis C treatment was accessed by 91% of co-infected CEASE participants by 2018. This led to a substantial decline in the proportion of people in the study who had active hepatitis C from 82% in 2014 to 8% in 2018. Australia is one of the first countries in the world to show such a dramatic effect in people living with HIV, and this is a result of the rapid uptake of DAA medications, one of the cornerstones of the elimination effort.
Read more: On the road to hepatitis C elimination for people living with HIV published on 15 November 2019
Strategic Timing of Antiretroviral Treatment (START)
The Strategic Timing of Antiretroviral Treatment (START) study is a randomised and interventional clinical trial held in collaborating study site locations in Australia and internationally in over 35 countries between 2009 and 2015. It is run by INSIGHT (International Network for Strategic Initiatives in Global HIV Trials) of which Kirby Institute, UNSW Sydney and National Health and Medical Research Council, Australia are collaborators. START is still collecting long-term follow up data on participants in the study.
However, the individual risks over two years were still quite small. Because of this, the researchers wanted to look at people who started the study with a low viral load. Out of more than 4,500 people in the study overall, 1,134 began with a viral load less than 3000 cells/mml. This included 93 people whose viral load was undetectable (less than 50) without ART. Current analysis is being carried out on the 1,134 people.
NAPWHA has supported this study since its inception. The previous Executive Director of NAPWHA, Jo Watson played a key role in establishing a Community Advisory Board to contribute to the development of the study protocols, disseminate information arising from the study and explore any policy implications. Dr John Rule now represents NAPWHA on the Community Advisory Board (CAB). The CAB continue to monitor any outcomes that might be of interest to communities and to this end have encouraged the preparation of regular newsletter updates (see PDF: START Newsletter—Technical Update, June 2019) and to ensure that information is translated into lay terms (see PDF: START—Lay Summary, August 2019).
Prospective Ageing Well Study (PAWS)
PAWS stands for ‘Prospective Ageing Well Study’ and aims to explore health and lifestyle patterns among older gay and bisexual men (aged 45 and over) to have a better understanding of how gay men are ageing, and whether this differs among gay men with HIV compared to gay men without HIV. This will help appropriately plan for health services in the future. The study is run by Kirby Institute, UNSW Sydney. It requires qualifying participants to complete a questionnaire (15-20 minutes).
The study is currently recruiting: Visit the PAWS website
Stigma Indicators Monitoring Project
NAPWHA is a partner/collaborator on the Stigma Indicators Monitoring Project conducted by the Centre for Social Research in Health, Faculty of Arts and Social Sciences, UNSW Sydney. Stigma and discrimination have remained persistent problems experienced by people living with HIV and it is hoped that through developing a set of indicators that future strategies and interventions to reduce stigma and discrimination can be carefully designed, assessed and measured for their impact. Stage one of the project has produced information on the extent of stigma experienced; details about experiences of people with HIV can be found in a brief report which was published to coincide with Worlds Aids Day in 2018. Download the Stigma Indicators Monitoring Project Report [PDF]
Moving into the next stages of the project the aim is to design, trial and assess interventions which aim to reduce stigma. NAPWHA will continue to provide advice through representation on the Project Advisory Committee. Further information can be found at Stigma Indicators Monitoring Project webpage
Research that may be of interest to people with HIV
A study on drug consumption practices among sexual and gender minorities is being undertaken by researchers from the Department of Gender and Cultural Studies (University of Sydney), along with colleagues from Monash University and UNSW.
For people with HIV there may be some interest in participating in the study as the researchers are also including substances that they might not immediately be thought of as ‘drugs’, for example antiretroviral treatment. A broad range of drugs is included in the scope of the research—for example, illicit drugs, prescription pharmaceuticals, steroids, hormones, and antiretrovirals (as HIV treatment or PrEP). Researchers are interested in people’s expectations and experiences of the way these substances affect their sexual or gender performance, and the strategies people use to maximise desired effects and minimise potential negative effects. The survey covers the following areas: drug and alcohol consumption practices; specific expectations and experiences of drug consumption; well-being; use of services; and attitudes and experiences related to gender. The study of open to anyone with lesbian, gay, bisexual, transgender or queer (LGBTQ) experience. The study is currently recruiting: Visit the Chemical Practices website
The Trust in Digital Health study is led by researchers at UNSW Sydney to understand how people from a range of different communities are choosing to store and share their personal health information in a variety of digital health systems and technologies, including electronic health records, apps, social media sites, wearable devices, online forums and virtual health consultations.
While we are interested in understanding what shapes trust in digital health more broadly, very little research has been conducted on this issue with populations affected by or at risk of blood borne viruses (BBVs) and sexually transmissible infections (STIs) in Australia. Start the survey here: Visit the Trust in Digital Health website