HIV advocates translate academic research into 'plain speak'

Three Australian HIV advocates all living with HIV have undertaken a Knowledge Translation project to help the Australian HIV community better understand complex health information.

Research carried out by healthcare professionals and academics can often be misinterpreted or misunderstood by the public.¹ Knowledge Translation (KT) projects take academic papers and translate them into resources that help people understand specific and often complicated research. Whilst KT is common practice internationally, in Australia it is mostly unknown.

The project — led by Beau Newham, Heather Ellis and Anthony McCarthy — focused on translating research on the unmet needs of people living with HIV in Australia into a series of short TikTok videos, memes and newspaper articles.

The project focused on ensuring important health messages were more likely to be understood by relevant communities and highlighting the role that person-centred care can play in improving health outcomes for people living with HIV, especially as they age.

Brent Allan, one of the authors of the academic paper, proposed the KT exercise after seeing the success of similar projects overseas.

“The outcome of this Knowledge Translation by Anthony, Beau and Heather has far exceeded all expectations. What we have done here in Australia can be considered the ‘gold standard’ of KT globally. This is where community advocates are partnered with manuscript authors to co-create a translation of an academic paper that everyone understands.” they said.

Anthony McCarthy, an HIV community advocate said that by translating complex data into easy-to-understand content we can help empower people living with HIV.

“Translating important findings from key academic papers into accessible language, and using engaging visual media such as videos, memes and gifs to capture attention, has helped educate, inform and ultimately empower people living with HIV,” McCarthy said.

Beau Newham, HIV community advocate and key contributor to the project, believes that KT projects are the natural next step once research is published.

“The publication of academic papers is not the end point of research. All authors and the community should better invest their time and efforts in comprehensive KT projects such as this one.”

Heather Ellis, Communications and Engagement Coordinator at Positive Women Victoria and HIV community advocate, said she hoped this example of KT will also be adopted by other health sector groups.

“There is so much academic research out there, but so much of this valuable information is often lost as it is not accessible to everyone, especially those from culturally diverse backgrounds,” she said.

Ann Maccarrone, Community Engagement and Partnerships Manager at ViiV Healthcare Australia, believes that it is crucial that people living with HIV have access to clear and easy-to-understand information about HIV and their health. The project was funded by ViiV Healthcare and The National Association of People with HIV Australia (NAPWHA).

“Providing people living with HIV with access to up-to-date information about their health is vital in ensuring they can play an active role in their treatment and care journey. Findings from the Positive Perspectives survey showed that those more engaged in their care reported more favourable health outcomes.² Knowledge Translation projects are designed to help equip people living with HIV with easy-to-understand scientific information and empower them to advocate for themselves and their quality of life,” Maccarrone said.

References:

^{Thomas, A., et al., 2014. Applications of social constructivist learning theories in knowledge translation for healthcare professionals: a scoping review. Implementation Science, 9(1), pp.1-20.}

^{Allan, B., et al., 2021 Quantifying unmet treatment needs among people living with HIV in Australia and other countries. Population Medicine;3(October);28 https://doi.org/10.18332/popmed/143160}

Image credit: ©stock.adobe.com/au/lordn