Quantifying unmet HIV treatment needs: Peers explain research on TikTok
Did you know your relationship with your doctor can have a direct impact on your health? This explainer was made by people living with HIV—Anth, Beau and Heather—and was made to help share some of the messages from a research paper that explored the unmet treatment needs among people living with HIV in Australia and other countries.
Access the research paper through the link buttons below. You can also find out more (below) about the peers behind the ‘Peers Explain’ TikTok channel, and read about how this community-led knowledge translation initiative which references the ViiV Positive Perspectives 2 Survey came about.
About the initiative
Meet the Peers
Meet the peers from the newly established Peers Explain TikTok channel.
Anth McCarthy has lived openly with HIV since 2016. He works with a broad cross-section of people living with HIV in his role as Peer Navigator at Living Positive Victoria. In particular, he provides targeted peer support to other heterosexual men living with HIV. He collaborates with them individually and in groups, to promote well-being, build resilience, build community and a sense of connection to the Body Positive. From 2020, he was a Community Advocate for the NAPWHA HIV Health Literacy project, where he continues to advocate for and on behalf of positive heterosexual men with a collective HetMAN Australia (the Heterosexual Men’s Advocacy Network).
Heather Ellis is a freelance journalist and author of two bestselling travel memoirs. She has lived with HIV since 1995 and is a former Chair of Positive Women Victoria, Australia’s only fully funded support and advocacy group for women living with HIV. With the organisation in 2021, Heather produced Our Stories: Ending HIV Stigma, a podcast about women, by women living with HIV in Australia to challenge the myths and stereotypes that feed HIV stigma. As part of the NAPWHA HIV Health Literacy Framework project, Heather was a co-author of the community resource Breastfeeding for women living with HIV In Australia published in September 2021.
Beau Newham upon joining the team as Peer Navigator at Living Positive Victoria, brings the experiences of working alongside HIV-positive communities in Australia, Indonesia, Papua New Guinea and Malaysia. Over the last 7 years, Beau has seen first-hand the devastating impact HIV continues to have on neighbouring countries, and communities at the margins. At the same time, seen the profound change made possible by people living with HIV coming together to support each other and advocate for PLHIV-centred HIV responses.
How did the ‘Peers Explain’ initiative come about?
In November 2021, three of the authors (Ann Maccarrone, Fraser Drummond and Brent Allan) of a recent paper on Quantifying unmet treatment needs among people living with HIV in Australia and other countries published in Population Medicine Oct 2021/Vol 3 partnered with three community advocates (Beau Newham, Heather Elis and Anthony McCarthy) and people living with HIV in Australia who were interested in taking this paper and creating a community and PLHIV-specific document which summarises the research for greater accessibility.
What is knowledge translation?
Knowledge Translation (KT) is a commonly used practice across many disciplines to take what would otherwise be academic and conference papers to reconfigure and translate these into community accessible resources.
The aim of KT is to ensure that knowledge development is made more accessible to a greater body of people and in particular those involved as the subjects in the research and the agencies that are commissioned to support them.
What were the knowledge translation activities developed?
Over December 2021 and January 2022, the authors guided the community advocates through their comprehension of the paper and assisted with the creation of a plain English, easily accessible version of the paper.
What happened next was the community advocates developing content including a short video (TikTok style; in a plain English summary) and two memes to be used to promote access to the paper and the important messages therein. The work (outputs) of these three community advocates can also be found on this summary webpage.
— Anth (@anthmccarthy) March 26, 2022
@HeatherEEllis @BeauNewham and I also created this meme. It is designed to underline the challenge of representing ALL people living with HIV (#plhiv) in research, and to remind us to be cautious when drawing conclusions. https://t.co/xxuw3IXYVA pic.twitter.com/aRWTSpMoTs
— Anth (@anthmccarthy) March 29, 2022
Above: Community Advocates and supporting community organisations have promoted the knowledge translation content across different social media platforms including Twitter, Instagram, Facebook and TikTok.
Key reflections on the KT project
- The process developed new partnership and relationships across professional disciplines
- The process highlighted how critically important community advocates are to knowledge translation being accessible and useful
- Restrictions on in-person work elongated the time needed to do the work
- Payment to community advocates is critical so the project is viewed and valued as the important work it is
- All three community advocates spent approximately 1 full day on the project over the course of 3-4 months
- The process and permission allowed creativity and lateral thinking to be brought to the foreground
- Important once the outputs are done to consider promotion and communication activities as a full team
The learning and perspectives on the process have been used to develop a submitted abstract for the AIDS2022 conference in Montréal in July 2022 and as a proposed abstract for Australasian HIV&AIDS Conference 2022.
We hope that the outcomes from this project can more fully demonstrate that the publication of academic papers is not the end point of research and analysis but that all authors and the community should better invest their time and efforts in comprehensive KT projects such as this one.
More about Positive Perspectives 2
Above: The ViiV Positive Perspectives 2 (PP2) study is a multi-country survey which was created to generate insights into the unmet needs of people living with HIV (PLHIV). It is one of the largest global, HIV patient-reported outcomes studies involving 2,389 PLHIV across 25 countries.
NAPWHA has been a partner of this study to disseminate research findings to the Australian PLHIV community.
Positive Perspective 2 survey community webinar
- On March 26, 2021 — NAPWHA hosted a community interactive webinar discussing the data from Positive Perspectives 2.
TIM Townhall community webinar
- On June 23, 2021 — five panelists, all TIM (The Institute of Many) members, were invited to speak from their own lived experience as they engage with the Positive Perspectives 2 findings in an online ‘TIM Townhall’ webinar event.
Quality of Life for All symposium
- On September 8, 2021 — An exciting symposium for participants in the Virtual Australasian HIV&AIDS Conference 2021 were invited to a panel of clinicians and people living with HIV invited to speak from their own lived experience. The symposium asked a vital question: ‘Are we on-track to achieve Quality of Life for all people with HIV by 2030?’
Finding Joy virtual community event
- On May 13, 2022 — NAPWHA is hosting an online community event ‘Finding Joy’ will feature the launch of the Australian Community Accord on Quality of Life for People with HIV, which incorporates the insights and experiences that people living with HIV shared with us at the online community events NAPWHA held in 2021.
What the research found
Australians living with HIV have among the highest levels of satisfaction with their HIV care. New research considered Australian data from the international Positive Perspectives 2 study. It looked for differences between people with HIV in Australia and other countries. Despite the positive overall results, Australian participants were unhappy with their mental health. They also had concerns about long-term side effects of HIV treatment. These concerns are not always addressed by HIV care providers.
What is Positive Perspectives 2?
This web-based survey was conducted in 2019. It gathered data from 2,389 people on HIV treatment, including 120 from Australia. It looked for differences in treatment attitudes and behaviours. The aim was to identify unmet needs and improve ‘person-centred’ care.
What is person-centred care?
Person-centred care goes beyond achieving undetectable viral load. It aims at good quality of life. This happens when people with HIV can talk to their doctor freely about their mental and physical health. The doctor listens and offers solutions. Together, people with HIV are partners in their own care.
What is the ‘fourth 90’?
Good quality of life has been proposed as the ‘fourth 90.’ What does this mean?
Back in 2013, UNAIDS set three targets for ending the HIV epidemic.
- 90% of people with HIV know their status.
- 90% of diagnosed people are on treatment.
- 90% of people on treatment have undetectable viral load.
Researchers and community leaders have pushed for a fourth 90. Quality of life is more than viral suppression. It underpins everything we do.
What the research found
- Most participants had an undetectable viral load (97%).
- Most participants were satisfied with their HIV care (83%).
- Most participants were not stressed about taking their pills each day.
- A third reported needing help with their mental health (35%).
What about side effects?
Certain issues were concerns for people with HIV in all 25 countries surveyed. These include side effects, the number of pills taken each day, and long term health. A third of participants in Australia (31%) reported side effects from HIV medication. The highest was Mexico at 75%. About two thirds of all participants worried about long-term effects of HIV treatments, including 63% in Australia. The highest level of concern was in Argentina (88%).
Australia leads the world in some respects. People with HIV in Australia feel comfortable talking to their doctor about side effects (81%) and HIV treatments (93%). Three quarters said their doctor asks for their views before prescribing HIV treatments (76%).
Agreeing on a treatment plan
To improve person-centred care, the research suggests a treatment plan should be created. It should be evaluated regularly, even when you are happy with your medication. This can happen through a regular conversation with your HIV care provider. It should address your concerns about long term effects of treatment, such as liver, kidney and bone health.
The research found communication between doctors and patients can be improved. In particular, participants felt they were taking up too much of their doctors’ time. There may not be enough time in appointments to discuss patient concerns.
What are the next steps?
The research helps us understand the needs and preferences of people with HIV in Australia and around the world. This can help us improve person-centred care and quality of life for people with HIV.
Many studies report people with HIV have lower quality of life. This includes having more age-related illness earlier in life. This can mean taking other medications in addition to HIV treatment. This can lead to ‘polypharmacy,’ or taking more than five pills daily.
To achieve good quality of life for all people with HIV, treatment and care must be holistic. This means care providers consider both physical and mental health concerns. They offer solutions, which may include new treatment options. They engage people with HIV in shared decision-making about their care.
Limitations to keep in mind
Only fourteen Australian women participated in the survey. We need to look at other research and resources to understand the experiences of positive women.
Similarly, the survey did not ask about the race/ethnicity of participants. Indigenous and culturally diverse people may have worse experiences of HIV treatment and care.
Survey participants were drawn from people already engaged with PLHIV organisations. They are likely to be doing better than people who are not connected with care and support.
These limitations are not reasons to dismiss the research findings. If anything, they underscore the need for improvements in patient-centred care.