Celebrating 30 Years of Impact

Testimonials from our collaborators

For the past 30 years, the Centre for Social Research in Health has been an important research partner that provides a complementary body of work to the surveillance data for sexually transmitted infections and blood-borne viruses.  

The importance of social research remains, as an understanding of new and emerging trends in STIs and BBVs continues to be needed to plan and implement policy and programs. The CSRH has assisted the WA Department of Health by providing reports on stigma and discrimination experienced by people who have a had a sexually transmitted infection or living with a blood-borne virus. Happy Birthday CSRH!

The Centre for Social Research in Health (CSRH) plays an outstanding role in shaping public discourse and influencing public policy around some of the most challenging social health issues to affect Australia over the past 30 years. Its commitment to including community voices and recognizing lived experiences and its multidisciplinary approach impact significantly on the health and wellbeing of individuals and populations in Australia and across the world, including especially the most marginalised groups.

As a clinician and researcher in sexual and reproductive health and rights, and Medical Director of Family Planning NSW, I have cherished the opportunity to work outside a biomedical model with  top-class  minds on policy, practice and discourse in areas such as stigma-free abortion, masculinities and contraception. The Centre’s commitment to reducing stigma and enhancing access to innovative person-centred healthcare demonstrates its clear vision of purpose. It is, at all levels, welcoming, nimble and embracing of emerging social and health issues.

The Centre is exemplary in disseminating its outputs and achievements through its website, publication series and newsletters, and in engaging communities beyond the university through its public lectures and forums. In short, it makes a highly visible and truly outstanding contribution to the health and wellbeing of our society.

It has been a real honour to have worked with CSRH and to have seen firsthand the impact the Centre’s innovative work has had on the lives of many marginalised people and communities.  Your approach to meaningful partnerships as led the way in Australia and demonstrated how to engage with the very people whose lives are being researched.  More than that you have remained committed to empowering people, organisations and communities. From journal clubs for NUAA staff to trialling human research ethics processes for research involving people who use drugs, the Centre has always been willing to support and take on new initiatives. Most importantly you are an honest bunch and this honesty has meant trusted and respectful partnerships have evolved that have passed the test of time. Not always a bed of roses, the commitment to working together has always been the end goal meaning that any issues or challenges were explored and ironed out. This is the test of true partnership. Here’s to another 30 years of excellent, research partnerships and initiatives to ensure that the people most marginalised are seen, heard and considered and that lives are changed for the better.

Happy Birthday!

From the earliest days of the epidemic a partnership between people with HIV and researchers has been a fundamental part of Australia’s successful response to HIV.  For 30 years now, the Centre for Social Research in Health has demonstrated an ongoing commitment to partnership with communities. They regularly create spaces for the voices of people with HIV to be heard and to have their say in the way research is designed, how HIV positive participants are engaged, and the way study results are presented.

The work of the Centre remains as crucial to success of the Australian HIV response today as ever it has been. The stigma indicators in particular, have enabled the measurement of one of the major barriers to positive health outcomes for PLHIV in Australia. This, in turn, has allowed the setting of national targets for stigma reduction; which is one of the most important elements of the Eight National HIV Strategy.

The advocacy work of the National Association of People with HIV (NAPWHA) is only possible thanks to a world leading evidence-base that accurately describes our communities and gives us the evidence and understanding we need to ensure a flexible response to a constantly changing epidemic.

NAPWHA wishes the CSRH a very happy Birthday and we look forward to many more successful years of research collaboration.

Positive Life NSW (PLNSW) congratulates the Centre for Social Research in Health (CSRH), UNSW, on its 30th anniversary and acknowledges the long standing supportive relationship it has built up over the past three decades with communities of people living with HIV (PLHIV).

CSRH’s collaborative research approaches involving the community voice has profound impacts on PLHIV lives by acknowledging and contributing to a better understanding of the experiences and effects of stigma and discrimination which has been instrumental in examining barriers in healthcare settings and the wider community. CSRH research is aligned with PLNSW’s goals in changing attitudes to HIV including transmission, testing and treatment uptake, access to services and support, mental health, and risk reduction.

CSRH’s research has also informed the development of national and jurisdictional bloodborne virus strategies and are recognised internationally for their longitudinal community periodic data on the health outcomes for PLHIV including gay and bisexual men, and marginalised communities such as Aboriginal and Torres Strait Islander, heterosexuals, and culturally and linguistically diverse populations.

We commend the CSRH for the quality and relevance of its work in supporting public health and health systems policy and practice through its seminal behavioural and social research. CSRH’s research has qualified and strengthened our work with PLHIV, and we look forward to ongoing support and partnerships.

Hepatitis NSW congratulates the Centre for Social Research in Health (CSRH) at UNSW Sydney on its 30th birthday.

The Centre’s first engagement with hepatitis C came in 1999 at the 2nd Australasian Viral Hepatitis Conference in Christchurch, New Zealand, with a presentation by Max Hopwood about injecting patterns among Sydney gay men and the risks for hepatitis C transmission.  Following that, the Centre went on to develop a program of hepatitis C-related social research.

The Centre’s first study into the lived experience of hepatitis C again by Max Hopwood, led to The 3D Project: Diagnosis, Disclosure and Discrimination among people living with hepatitis C in 2000.  Since then, many viral hepatitis social research studies by the Centre have guided advocacy, policy, resource development and education projects.

Hepatitis NSW has been a strong and supportive partner of and friend to CSRH for over 20 years.  It has been our pleasure to be part of the Consortium for Social Research in HIV, Hepatitis C and related diseases, to assist with recruitment for many hep C and hep B studies, to promote studies’ findings and to work collaboratively, especially under Carla Treloar’s directorship, as well as advocate improvements in policy and practice.

As we work to eliminate viral hepatitis, Hepatitis NSW strongly supports CSRH’s continuing leadership role in social research to inform and guide arguably the key challenge to elimination: that of population behaviour change.  Here’s to continuing our productive partnership in the years to come.

The Centre for Social Research in Health (CSRH) plays a key role in Australia’s response to viral hepatitis, particularly in terms of understanding the complex manifestations of stigma and how policies and programs can be meaningfully redesigned by, for & with affected communities. The stigma research produced through CSHR are essential data indicating Australia’s progress against our national viral hepatitis strategies. CSRH’s approach to research is to work and walk with affected communities, this is demonstrated in the culture of the staff, and high quality and high impact of their work. Happy 30th Birthday! All the best for the next 30 years!

As Director of the Australian Research Centre in Sex, Health and Society, I’m delighted to offer the Centre for Social Research in Health many congratulations on its 30 years of invaluable research. Among CSRH’s key achievements are its leading role in establishing in 1996 a program of behavioural surveillance research to inform Australia’s HIV response, and its highly original work on living with HIV, which brought to attention experiences of the side effects of treatment, the experiences of heterosexual people living with HIV and the issues faced by serodiscordant couples. In the hepatitis C area, CSRH developed important new knowledge on experiences of living with hepatitis C, and introduced new ways of measuring experiences of treatment. The Centre also introduced novel multidisciplinary approaches to evaluating models of care, and established a unique stigma monitoring program to inform progress towards national goals in reducing the stigmatisation of people living with hepatitis C.

CSRH is known for combining high quality, cutting-edge social science research with partnerships with communities, governments and industries. In doing so it has also placed multidisciplinary work at the centre of its activities. The result is a highly respected body of work that has, over many years, helped address complex social problems in Australia and around the world.

I have enormous admiration and affection for the CSRH; I regard it as a remarkable, precious and rare entity in the Australian research landscape. Its contribution to knowledge about health (and hence its national benefit) is hard to overstate. While always making space for a diversity of research topics, disciplines and methods, it has also developed a strong unifying vision of critically engaged and conceptually rigorous work. Over the decades of its existence, the CSRH has consistently produced research that is scholarly and intellectually exciting, but also policy and practice relevant. It has been exemplary and highly influential in its model of collaborative engagement with diverse communities

The period I spent at the CSRH as a post-doctoral researcher (during its time as the National Centre for HIV Social Research) was formative of my values as an academic and my thinking about drug use, sexuality and health. It’s no accident that so many prominent Australian health researchers have or have had close connections with the centre. It has a well-deserved reputation for ‘capacity-building’, that is, as a place where ECRs receive first class training and development, and are supported to become independent, creative and ethical leaders in health research.

The Centre for Social Research in Health has led highly impactful and innovative research for 30 years. At the Kirby Institute, we have had the privilege of working alongside CSRH throughout that time.  Our highly collaborative and productive relationship has led to partnerships projects spanning HIV, hepatitis C and sexual health, all aimed at improving the lives of often marginalised and underserved communities. 

CSRH has led some of the country’s largest behavioural studies that have enhanced our collective understanding of how to address critical health issues in these communities and have informed Australia’s health policy and practice. The Gay Community Periodic Survey is a recurrent national survey that continues to contribute to surveillance of and the design of tailored interventions for HIV and sexually transmissible infections, a significant area of focus for the Kirby Institute. Our extensive work together on understanding hepatitis C risk and prevention has been internationally recognised, contributing to Australia being considered a world leader in hepatitis C control and elimination efforts. 

Under the directorship of one of Australia’s leading social scientists, Scientia Professor Carla Treloar, CSRH produces world-leading research that contributes to the evidence base for some of society’s most pervasive and challenging health conditions. We at the Kirby Institute congratulate CSRH on 30 exceptional years of leading social research with impact that improves the health and well-being of underserved and/or marginalised communities.

On the occasion of the 30th anniversary of the Centre for Social Research in Health (CSRH), I would like to commemorate the excellence of CSRH and its impact examining the social aspects of sexual health, mental health, digital health and, especially, the health of vulnerable populations. 

This work extends beyond UNSW through Deborah Lupton’s role as a Commissioner in The Lancet & Financial Times Commission Governing health futures 2030: Growing up in a digital world, of which I am Co‐chair. Deborah has contributed rich insights into digital health, data, and the unique consideration owed to children and young people, strengthening knowledge, policy, and practice in this area. 

The Commission shares the values of CSRH, with a multidisciplinary approach to research, the urgency for critical perspectives, and a commitment to diversity, equity, and participation. Thank you, CSRH, for your 30 years of important contributions, and to many more years to come.

Back in 2007, I co-founded the initiative “HIV in Europe”, and one of our early members was Professor John de Wit, then director of CSRH. On one call he noted the late hour (he is Dutch), which surprised me. Later I learned that he commuted to Australia! While John is now full time in the Netherlands, and still collaborating with us on HIV, I have been privileged to collaborate with Carla Treloar – who obviously needs no introduction.

I have been inspired by her PROM for hepatitis C, which has informed our work in Europe and when I was asked to select a few global experts on stigma and discrimination to work with us at the EASL-Lancet European Liver Commission, obviously I turned to Carla. There is no INHSU this year to connect in person – but I hope to make it to Australia again one day and meet her and the rest of the staff. Feliz cumpleaños from Spain.

The Centre’s early work in the late 1980’s was breathtaking for me, so exciting, such fresh thinking and wonderfully challenging. Sue Kippax’s brave and insightful approach helped us to understand the importance of peoples lived experience and the intimate connections between HIV transmission, drug use and sex; between relationships, vulnerability and risk and the social, cultural and political factors that impact on these.

It has provided a deep understanding which still leads the world - informing state, national and international strategies, as well as cutting edge campaigns, training and health promotion. In the early days the Centres work informed the development of our projects with women negotiating sex and the importance of explicit clear messaging, now almost 30 years later, the Aboriginal project, ‘What We Do Well’ seeks to understand how young people’s current strengths (social, cultural and personal) can build sexual wellbeing.

The Centre has had exceptional leadership, extraordinary academics and has undertaken visionary work providing a positive strong voice for social change and a deeper understanding of people’s lives. With changes in leadership, location and name the heart and values of the work undertaken by the CSRH have remained as shiny as in those early days.

Happy birthday everyone at CSRH!  Thirty years is a long time in the life of a research centre. First, I want to congratulate the leadership of CSRH for your longevity and for staying true to your mission over such a long time.  CSRH is a model for all of us, you have consistently responded to the health challenges of our times with scientific rigor and commitment to community.  Your team does not produce research for communities you do it with communities.  I applaud you for your long-standing research partnerships with the most vulnerable and underserved communities of Australia and for applying a post-colonial approach to research.  Your efforts have helped us better understand the most pressing public health problems over the last thirty years and produced efficacious solutions to address them.  We have enjoyed collaborating with you from Arizona.  Each time we see Carla Treloar and her team here at ASU or there at UNSW, we feel inspired and welcome.  We wish you many more years of success and contributions to Australia and the world. 

The Centre for Social Research in Health (CSRH) works with integrity, compassion and commitment and sets the bar extremely high when it comes to social and behavioural research on health related issues.

In shaping research the team at CSRH work closely with not only the community sector organisations but also community members to ensure all research reflects real experiences and informs effective policy and practice.

CSRH are research leaders who don’t shy away from the difficult topics that are politically loaded or emotionally charged.  At Meridian we consistently engage with the team at CSRH to inform our work locally and evaluate impact.  Meridian is more effective and more sustainable because of our partnership with CSRH. 

I first became aware of the CSRH over ten years ago when I found myself consistently reading and referencing their work. Beyond the quality and volume of their outputs, I was particularly impressed by their expertise in conducting theoretically informed applied research that provided original insights for those working in the fields of substance use, HIV and Hepatitis C internationally. When I visited the Centre in 2010, some of the reasons for that success became clear to me.

A good research centre is built upon committed, highly skilled, hardworking researchers who show respect for, and have the trust of, those whom they study. They must be open to the unexpected, willing to report the uncomfortable, and show resilience and integrity when things get tough. They also need to be able to work independently, pull together as a team, and benefit from strong leadership. In 2010, the CSRH didn’t just have one brilliant researcher, it had many. Ten years later, they continue to produce an enviable amount of excellent research that has impact around the world. Moreover, they remain equally impressive as individuals, a team and a centre.

The Centre for Social Research in Health has delivered high quality social and behavioural research with communities affected by HIV for 30 years. AFAO and our members work in partnership with the Centre to deliver Australia’s HIV response. The Centre’s research has been vital in shaping an understanding of the deeply social and political nature of Australia’s HIV epidemic, evaluating the effectiveness of HIV policy and programs, identifying new issues and understanding how communities adapt to changes in scientific knowledge, including biomedical prevention.

The Centre’s research approach has been characterised by partnership and collaboration and a deep respect for the knowledge and agency of individuals and communities affected by HIV. In the early years of Australia’s HIV epidemic, the Centre championed consumer and community participation in research. At the time this was uncommon and wrongly viewed as undermining research integrity. The Centre has worked collaboratively with communities over its 30-year history producing rigorous scientific evidence that addresses real world problems. The Centre has made an astonishing contribution to scholarship, policy, and health promotion in Australia and internationally.

The partnership between ACON and Centre for Social Research in Health (CSRH) has always resulted in better health outcomes for our communities.  

Since the beginning of the HIV epidemic CSRH has demonstrated a commitment to ensuring the highest standards of behavioural and social research that has informed effective policy and program design and delivered real benefits. 

The importance of projects such as the Gay Periodic Survey, the Crystal, Pleasures and Sex Study, and the Asian Gay Men's Survey cannot be understated. Through these research projects, CSRH has contributed to an invaluable evidence base on the health of our communities that spans many decades. 

CSRH staff have contributed to the ACON Board, the ACON Research Ethics Review Committee and countless project advisory and working groups, ensuring that our communities are protected from harm, and see the real benefits of research involving them. 

The CSRH is fearless in its approach and support for the issues that affect our communities, especially those who face marginalisation. People living with HIV, injecting drug users, people from CALD backgrounds and people who face discrimination and stigma, willingly work with the CSRH because their researchers, their values and their experience prove that they can be trusted. 

Queensland Health congratulates the Centre for Social Research in Health (CSRH) for 30 years of research. Since 1998, Queensland Health has supported the annual Gay Community Periodic Survey and the agreement includes reporting on findings for Queensland through community, partner agency and stakeholder forums. These survey and reports are used to describe behavioural change over time (e.g. HIV testing frequency or use of HIV prevention strategies such as pre-exposure prophylaxis) and inform future policy and program development for gay men.

CSRH conducts a range of other social and behavioural research that can inform preventative activities. For example, sexual health-related knowledge, attitudes and practices of young people and stigma indicators surveys. The former has been useful to complement Queensland market research data for campaign development and to inform other health promotion activities and programs. The latter is developing indicators to assist evaluation of national strategies to address BBV and STIs.

Queensland Health appreciates the Centre’s expertise in comprehensive analysis and relevant reporting and looks forward to working with CSRH in future survey recruitment strategies, perhaps targeting non-students (e.g. trades) and young people from smaller towns and rural areas to make findings more relevant for non-metropolitan areas.

The Centre for Social Research in Health has been an invaluable partner in understanding the shifting patterns of the lives of gay men. For over two decades the Centre has offered a forensic examination of the sexual practices, health, social networks and recreational drug use of homosexually active men in Victoria. The Melbourne Gay Periodic Survey has been an invaluable tool, not only in understanding these shifts in behaviour but also as a strategic guide in our health promotion planning and implementation. The longitudinal, cross-sectional nature of this work, conducted during a period of unprecedented change in the epidemic of HIV in this state means that we will have an incisive barometer of attitudes and practices to refer to for years to come. The work that the Centre has engaged in over the past few years in Adelaide using the same model has dynamically informed program and service provision to the community in that state.

Fundamental to the success of this work has been the collaborative practice of the Centre and its willingness to consult, adapt and change to dynamic circumstances. We congratulate the Centre on its achievements and look forward to many more years of creative and productive research into practice.   

The HIV & Related Programs (HARP) Unit in Nepean Blue Mountains Local Health District (NBMLHD) has had the pleasure of participating in research and collaborating with CSRH over the past 22 years. In addition to providing research sites for studies, CSRH was engaged in a longitudinal (2009 -2012) study to identify how NSP services achieved the stated aims of the NSW NSP and contributed to broader health outcomes in relation to the health and well-being of people who inject drugs.

In 2015 CSRH evaluated the two original pilot sites of the Deadly Liver Mob (DLM) Aboriginal Hepatitis C project in Western Sydney. In 2017 the CSRH was the successful recipient of an NH&MRC grant, collaborating with LHD Aboriginal Sexual Health staff, NSP Staff, NUAA peers, the Ministry of Health and HARP services, to  pilot the DLM project across six NSW Local Health Districts. This has been a successful collaboration across rural, regional and metropolitan areas and initial results for project  transferability and scalability are very encouraging.

In 2016 Professor Carla Treloar, and Consultant Lisa Ryan worked with NBMLHD HARP (NSP) to develop the NSW NSP Program Logic. The Logic map was endorsed by the NSW BBV/STI Unit as part of the Receptive Syringe Sharing Framework and implemented 2016 -2020. The NSP program logic provided a mapping tool for the NSP to guide syringe distribution a performance measure and hepatitis prevention and treatment within the NSP setting.

In 2018 the NBMLHD NSP team worked collaboratively with Kate Miller and Carla Treloar to publish a commentary paper -  ‘C’ the Potential: Needle and Syringe Programs as Hepatitis C Treatment Sites. The commentary focussed on the incentivised hepatitis health promotion project, Positively Hep  as an engagement strategy for hepatitis C testing and treatment  in the NSP.

CSRH played an integral role in the development of the HETI module:  Stigma, Discrimination and Injecting Drug Use. This professional development module has been a valuable resource for LHDs across NSW, and helps to profile and tackle the pervasive negative values, attitudes and  behaviours of too many health care workers.
CSRH is a centre for excellence that NBMLHD HARP Team and statewide services value highly, Happy 30th Birthday from your admirers in the NBMLHD NSP & Hepatitis arm of HARP.

The Centre for Social Research in Health has demonstrated an exemplary commitment to collaboration and community partnerships that should not be understated. At a time when institutions and academics are under pressure to ‘publish or perish’ in what often resembles a production treadmill, CSRH have consistently and intentionally taken time and care to create meaningful partnerships and gone out of their way to involve sex workers at every step of their decision-making processes. This can mean that research is generated more slowly, with vital steps in place for community consideration and feedback, but it also means – importantly – that the research itself is more robust and has greater potential for impact.

CSRH are not interested in mere consultation nor tokenism. Instead, they have worked with us as equals to create a true and genuine partnership that involves equitable contribution, investment in community leadership, accountability to sex workers and distribution of findings back to the community. Our national qualitative sex work stigma research in partnership with CSRH has now developed into an annual quantitative stigma survey, which will generate vital data to inform recommendations for stigma reduction. Happy 30th Birthday to the Centre for Research in Health! Scarlet Alliance hopes to enjoy another 30 years creating excellent research together.    

The Centre for Social Research in Health (CSRH) researchers - working primarily with marginalised communities and/or stigmatised behaviours - have played a vital role in humanising populations while contextualising behaviours to inform the development of policies and programs.  Carla Treloar was one of the earliest researchers to explore the macro influences on marginalised communities and/or criminal behaviours, helping to change the dangerous policies that blamed and stigmatised the individual, without considering the social, economic and political factors that played an enormous role in the uptake of drug use in some communities. 

Carla’s early acknowledgement of the complexities and variation of human behaviour saw her undertake a number of ground-breaking research projects in partnership with the drug using community, including a more recent study on couples sharing equipment that paved the way for targeted and successful education campaigns.  CSHR and Carla’s work on Hepatitis C and its intersection with harm reduction and the drug using community has been at the very forefront of research in that area and has captured a more complete understanding of the interplays and interactions.  Carla - with the team at CSHR - is continuing to come with us on our journey under prohibition and the Centre is now also undertaking research into the emerging area of illicit drug use and ageing arena.  This ongoing contribution is highly valued and to be commended.

The Victorian Department of Health and Human Service (the department) has a long and valued history of working with the Centre for Social Research (the Centre) in Health and the Kirby Institute at the University of New South Wales on diverse projects such as the Australian Gay Community Periodic Survey, HIV Seroconversion and RISE (Recent diagnosis and the impact of support on the experiences of HIV) studies. For example, the department has collaborated with the Centre on the annual Melbourne Gay Community Periodic Survey since 1998 and has worked successfully with the current research team over the past decade.

This leading behavioural research has influenced HIV and sexually transmissible infections policy design and implementation efforts. The department’s partnership with the Centre and subsequent translation of research into practice assists in strengthening public health action to improve health outcomes for priority populations. A recent example of this is working with the Centre to commission a series of Victorian specific cohort analyses of the national stigma indicators data to inform approaches to stigma reduction using a settings-based approach in primary and community care. It is a pleasure to collaborate and work with the Centre and the team. Happy 30th birthday and may there be many, many more.

Following the COVID-19 crisis, there has never been a more important time than now to consider the impacts and social determinants of health. Over the last 30 years, the Centre for Social Research in Health (CSRH) and its research staff has helped broaden our understanding of health-related issues for individuals, carers and their communities, including vulnerable or at-risk populations. As an organisation dedicated to interdisciplinary research, the Australian Council of Learned Academies’ (ACOLA) acknowledges the Centre’s important work and commitment to advancing behavioural and social research, and to promote balanced and considered perspectives across the sciences and arts.

ACOLA has welcomed the support of Professor Deborah Lupton, who leads CSRH’s Vitalities Lab. As a Fellow of the Academy of the Social Sciences, she has played a crucial role as a member of the Expert Working Group to guide the strategic development of ACOLA’s Internet of Things report. Her input has been especially critical in highlighting the social perspectives of IoT in smart cities and homes, and furthering our understanding of individual and community engagement with the IoT.

Congratulations on celebrating 30 years and we look forward to future collaborations with Professor Lupton and CSRH. 

Reflections from our staff

I have had the privilege to work as a Research Assistant to Carla Treloar, Joanne Bryant, Reuben Bolt, Jake Rance, and Max Hopwood to name a few. Furthermore, I have been guided by their patience, expertise, and brilliance to learn the particulars of qualitative research. I have also had the honour of conducting interviews, planning research projects, teaching peer interviewers how to interview, being a secretary on an Indigenous Advisory Committee, and contributing to research papers.

In that time, I have seen firsthand the difference qualitative research can make to the participants and the influence it can provide to funding and policy making from Local, State and Federal Governments.

The work we do at CSRH allows us to explore and provide a voice for the experiences of stigma and discrimination for vulnerable and marginalised groups. I feel very proud to have been part of this team at CSRH and to be able to produce research work that highlights the negative impact of stigma and discrimination on health outcomes for people who inject drugs and people living with viral hepatitis or HIV. Some of the research which I feel has made a significant impact are papers which focused on understanding stigma and its impacts as complex and nuanced for these vulnerable groups  such as these

10.1080/09540121.2012.752784;

10.1016/j.addbeh.2017.08.036

10.1080/09540121.2019.1659914

Joanne Bryant celebrating CSRH's 30th Birthday

For 30 years CSRH has documented the innovative and effective ways that marginalised communities have cared for each other

Health research tends to be very heavily focussed on describing the problems and risk behaviours that make people unhealthy, but we rarely hear about how people respond to their health needs in ways that are creative and effective in protecting themselves and others. Yet, for 30 years CSRH has done exactly that.

The communities that CSRH works with - those affected by HIV, viral hepatitis and STIs - include some of the most marginalised people in Australia. Their health-related behaviours are heavily researched and scrutinised, and they are often understood as necessarily risky because of their social disadvantage.

But the research at CSRH has offered an alternative perspective by documenting the varied, innovative and effective ways that the communities affected by blood borne viruses (BBV) respond to their infections.

‘Negotiated safety’ is an early example of this type of research. Sue Kippax, Gary Dowsett and others documented how gay and bisexual men worked together within partnerships of concordant HIV status to engage in condomless sex and, in doing so, reduced their risk while also being able to have the kind of sex they enjoyed. Similarly, Erica Southgate and Max Hopwood documented the care practices that existed in networks of gay and bisexual men who use drugs, identifying harm reduction strategies that were delivered by ‘lay experts’. For example, lay experts taught new initiates about how to control their drug use. More recently, Loren Brener, Kari Lancaster, and I have published work on ‘peer distribution’, the widespread but illegal practice whereby people who inject drugs pass on sterile needles and syringes to others in their networks. People who inject do this as a way to help others reduce their risk of hepatitis C infection, and they engage in these practices of care despite the criminal risks involved.

Underpinning all of this research is the view that people affected by BBV know what’s best for themselves and their communities, and that they are looking to protect themselves and minimise risk while having the experiences they want: having sex, taking drugs, enjoying themselves and building belonging. This research doesn’t seek to deny that harms exist, but instead gives meaning and explanation for why people might engage in seemingly unsafe practices.

This reframing of marginalised communities as risk-reducing, rather than risk-taking, has important implications. It contributes to new understandings by rewriting narratives that position people affected by BBV as deficient, necessarily risky and lacking the capacity to care for themselves and others, and instead documents their capacity for self and community care, responsibility, agency and innovation. In essence it reveals the resourcefulness and humanity of people affected by HIV, viral hepatitis and STI.

This is a wonderful legacy and congratulations CSRH.

Kippax S, Crawford J, Davis M, Rodden P, Dowsett G (1993). Sustaining safe sex: a longitudinal study of a sample of homosexual men. AIDS 7(20); 257-263.

Southgate E, Hopwood M (2001). The role of folk pharmacology and lay experts in harm reduction: Sydney gay drug using networks. IJDP, 12(4): 321-335.

Bryant J, Brener L, Pepolim L, Harrod ME (2019) Care, agency and criminality: Making sense of authorised peer distribution in the accounts of key stakeholders, IJDP 71: 56-61.

Bryant J, Hopwood M (2009). Secondary exchange of sterile injecting equipment in a high distribution environment: A mixed method analysis in south east Sydney, Australia. International Journal of Drug Policy,20: 324-328

Brener L, Cama E, Bryant J (2018). Patterns of peer distribution of injecting equipment at an authorised distribution site in Sydney, Australia. Substance use and misuse; 53(14): 2405-2412.

Lancaster, K., Seear, K. & Treloar, C. (2015). Laws prohibiting peer distribution of injecting equipment in Australia: A critical analysis of their effects. International Journal of Drug Policy, 26 912), 1198-1206.

Kerryn Drysdale_CSRH Birthday Message

I am so proud of the commitment to community-engaged research that CSRH prioritises, and feel privileged to be part of it. I am especially proud of the three-part podcast series, Crystal Clear, that we produced as a novel way to disseminate research findings from the Crystal Pleasures and Sex between Men project. Inviting community members and healthcare workers to respond directly with our material in thinking through the best way to support men who use crystal meth for sex resulted in an engaging, informative and very practical discussion. And having the legendary Tobin Saunders host the series was the cherry on top!

From one virus to another: A reflection on 30 years of HIV social research

The 30th anniversary of the Centre for Social Research in Health occurs during the cresting wave of the global COVID-19 pandemic. It feels both timely and discomfiting to reflect on three decades of social research into an older pandemic – the HIV/AIDS epidemic. Timely because we have decades of knowledge about how people respond to viral threats to their health, but discomfiting because familiar traps need to be avoided as we adapt to living with another virus.

The Centre for Social Research in Health, initially named the National Centre in HIV Social Research, was formed in 1990. Its primary responsibility was to research the social dynamics of HIV, including the practices that people engaged in that were protective or put them at risk of infection, the ways in which people understood and responded to the threat of the virus, and the prevention strategies that people found acceptable and compatible with their everyday lives. The focus on social ‘practice’ rather than ‘behaviour’ became a defining feature of the Centre’s work on HIV, reminding us that behaviours deemed as important in public health research (e.g. condomless sex) are part of social practices that are meaningful to people (having sex, making love, dating, hooking up) (Kippax, 2017; Kippax et al., 2013; Race, 2014). Understanding the meaning of what people do and the contexts in which they do them remain critical elements of developing effective education, health promotion and prevention responses that resonate with people.

The Centre achieved this engagement with social practice in a variety of ways, which continues in its work today. Encouraged by its Director at the time, Susan Kippax, it appointed researchers from the social sciences, humanities and health disciplines to work together and challenge each other’s assumptions about how to do research, create knowledge and interpret findings (Kippax, 2017; Race, 2014). From its inception, Centre researchers worked closely with members of community organisations and affected communities, to ensure the needs and priorities of community members were reflected in every stage of the research process, from design to dissemination. Working with governments ensured our research both responded to and altered policy and practice in an ongoing debate about evidence, effectiveness and priorities. These productive relationships between colleagues, community partners and policymakers are one of the hallmarks of the HIV response in Australia, and one of the reasons working at the Centre is so satisfying.

In the absence of a vaccine or effective treatment, the early decades of HIV social research focused on how communities responded to the threat of HIV and developed practices that could sustain sex, intimacy and pleasure while mitigating risk (Kippax, Connell, et al., 1993; Kippax & Race, 2003). Gay men and sex workers adopted condom use in large numbers, and worked out a variety of ways to sustain sex in an epidemic, constructing what we still refer to today as ‘safe sex’ (Bates & Berg, 2014; Kippax, Connell, et al., 1993). People who used drugs and advocates who worked with them pushed for sterile injecting equipment to be made available to reduce the chance of transmission through shared equipment, despite threats of criminalisation and pervasive stigma (Madden & Wodak, 2014). The Centre was critical to documenting and understanding these shifts in Australia, through large scale, community-based survey research, in-depth qualitative studies and theoretical engagement with constructions of care, risk, responsibility, wellbeing and identity.  

As the HIV epidemic turned into a long wave event in Australia, and it became clear that we would have to learn to live with the virus for decades rather than years, community responses evolved. It became clear through the Centre’s research that gay men, who remain Australia’s most HIV-affected population, were becoming less likely to use condoms with every sexual partner. This trend was observed in a number of countries with concentrated epidemics, and caused consternation in some quarters, particularly among those from a traditional public health perspective (Holt, 2014). The Centre and its partners resisted the urge to label this shift a failure or ‘relapse’ to risk, and instead investigated the change. The resultant research showed that many gay men, particularly those in relationships, were making use of the greater availability of HIV testing to assess the likelihood of transmission risk with their partners (Kippax, Crawford, et al., 1993). The decision by couples of the same HIV status to not use condoms with each other but to use them with casual partners, if they had them, was labelled ‘negotiated safety’. This practice was embraced by the Australian HIV sector as a reasoned, community-driven expansion of the safe sex repertoire, drawing on trust between partners, negotiation and regular access to testing. Negotiated safety was subsequently shown to be a highly effective way to prevent HIV transmission (Jin et al., 2009).

The experience with negotiated safety emphasised that social research needed to attend to creativity in community practice, particularly when there were shifts in technologies related to testing, prevention and care. It also reinforced the understanding that we should resist too rigid a view of what counts as safe or risky practice to avoid public health recommendations becoming seen as illegitimate, unacceptable or out of step with community norms.

In the late 1990s highly effective, combination HIV treatments became widely available, transforming HIV from a fatal infection to a chronic disease and promising to restore health and longevity to people living with HIV. The availability of treatment was a landmark moment in the global pandemic and shifted people’s perceptions of the threat of HIV. However, Centre researchers also identified a series of complications and challenges in engaging with treatment. Treatment combinations were not always easy or kind to people living with HIV, causing side effects, changes to body shape and conceptions of the self (Persson, 2004; Persson & Newman, 2006). The imperative to successfully adhere to treatment and achieve viral suppression could intensify feelings of responsibility among HIV-positive people (Race, 2001). These experiences showed that despite its life-saving capacity, treatment was not always straightforward and did not automatically translate into quality of life. This early treatment research underscored that we should always attend to what we are demanding of people when we offer something that biomedicine deems essential or beneficial, as its effects are rarely simple or uniform.

More recently, HIV treatment has become simpler and easier to take. Sustained treatment and viral suppression have been shown to have the profound additional benefit of eliminating the risk of onward transmission during sex (Cohen et al., 2011), again transforming what might be understood as ‘safe sex’. However, although there are signs of improvement, decades of HIV stigma and fear endure (Broady, Brener, Cama, et al., 2020; Broady, Brener, Hopwood, et al., 2020), and many community members remain cautious in relying on HIV treatment for prevention (MacGibbon et al., 2019). The refinement of treatment has resulted in ever higher levels of people living with HIV taking combination therapy. Yet some still struggle with treatment, because of competing life priorities, comorbidities, previous experiences of side effects, and concerns about being made more responsible for protecting others (Mao et al., 2018; Newman, de Wit, et al., 2015; Newman, Mao, et al., 2015). HIV-positive people on low incomes, taking multiple medicines or living in public housing may find it harder to adhere to treatment, underscoring that even in a high-income country like Australia, socioeconomic disparities can undercut biomedical advances (Siefried et al., 2017). Finding ways to reduce HIV stigma and attend to the most marginalised remain critical concerns.  

In the last ten years, another profound shift in HIV prevention has taken place with the discovery that the regular use of antiretroviral drugs by HIV-negative people is highly effective in preventing HIV infection (Fonner et al., 2016). Known as pre-exposure prophylaxis or PrEP, its introduction has prompted a rapid reordering of prevention practices, with PrEP becoming more commonly used than condoms by Australian gay men in the space of a few years (Mao et al., 2020). PrEP has led to a substantial decline in HIV infections in Australia for the first time in over a decade, with users reporting relief from fear about HIV and enhanced sex lives (Grulich et al., 2018; Holt, Lea, et al., 2019; Philpot et al., 2020). These developments are deeply welcome, but it is perhaps not a surprise that such a rapid change in HIV prevention has also generated disruption and debate. The Centre’s research has been critical to identifying these challenges. Not everyone who appears to be a suitable candidate for PrEP wants to use it, either not feeling sufficiently at risk of HIV or citing concerns about relying on medication (Holt, Lea, et al., 2019; Holt et al., 2020; MacGibbon et al., 2019). Equity in access to PrEP has been identified as a key issue (Newman et al., 2019), with the initial wave of uptake concentrated among Australian-born gay men in inner city areas, and those with a higher degree of socioeconomic security (Grulich et al., 2018; Holt, Lea, et al., 2019). Debates about who should prescribe PrEP, and its effects on condom use and sexually transmitted infections have at times divided the field, between those who see these as manageable issues and those who anticipate future problems (Holt, Newman, et al., 2019; Smith et al., 2020). The Australian HIV sector has embraced PrEP, treatment as prevention and condoms as key pillars of a combination prevention approach, but it remains to be seen how affected communities will embed these strategies over time, leading to new norms, practices, identities and perceptions of responsible conduct.

The calamitous emergence and spread of COVID-19 this year reminds us of critical elements of the response to HIV and the need for engaged, reflexive social research (Lupton, 2020; MacGibbon & Smith, 2020). As people have been asked to adjust their lives to minimise transmission risk, communities have responded by finding creative ways to maintain practices that are important to them, like intimacy and closeness to others. Technology has played a critical role in mediating this change (Watson et al., 2020). Debates between experts about evidence are lively and contested, attempting to identify what we need to ask of communities and what the future of the pandemic will bring (Lancaster et al., 2020; Rhodes et al., 2020). My colleagues at the Centre for Social Research in Health and in the broader field are actively engaged with the communities we work with to understand and resolve these challenges. Based on our experience in HIV social research, I’m sure that whatever we ask of people at risk of and affected by COVID-19, we need to find sustainable ways to reduce risk and live with the virus. The most effective responses will be those which result from listening to communities and being willing to adjust public health recommendations, so they work with rather than against people’s lives.

Bates, J., & Berg, R. (2014). Sex workers as safe sex advocates: sex workers protect both themselves and the wider community from HIV. AIDS Education and Prevention, 26(3), 191-201. https://doi.org/10.1521/aeap.2014.26.3.191

Broady, T. R., Brener, L., Cama, E., Hopwood, M., & Treloar, C. (2020). Stigmatising attitudes towards people who inject drugs, and people living with blood borne viruses or sexually transmissible infections in a representative sample of the Australian population. PLoS ONE, 15(4), e0232218. https://doi.org/10.1371/journal.pone.0232218

Broady, T. R., Brener, L., Hopwood, M., Cama, E., Treloar, C., & Holt, M. (2020). HIV stigma by association among Australian gay and bisexual men. AIDS, 34, S53-61. https://doi.org/10.1097/QAD.0000000000002565

Cohen, M. S., Chen, Y. Q., McCauley, M., Gamble, T., Hosseinipour, M. C., Kumarasamy, N., Hakim, J. G., Kumwenda, J., Grinsztejn, B., Pilotto, J. H. S., Godbole, S. V., Mehendale, S., Chariyalertsak, S., Santos, B. R., Mayer, K. H., Hoffman, I. F., Eshleman, S. H., Piwowar-Manning, E., Wang, L., Makhema, J., Mills, L. A., de Bruyn, G., Sanne, I., Eron, J., Gallant, J., Havlir, D., Swindells, S., Ribaudo, H., Elharrar, V., Burns, D., Taha, T. E., Nielsen-Saines, N., Celentano, D., Essex, M., & Fleming, T. R. (2011). Prevention of HIV-1 infection with early antiretroviral therapy. New England Journal of Medicine, 365(6), 493-505. https://doi.org/10.1056/NEJMoa1105243

Fonner, V. A., Dalglish, S. L., Kennedy, C. E., Baggaley, R., O'Reilly, K. R., Koechlin, F. M., Rodolph, M., Hodgs-Mameletzis, I., & Grant, R. M. (2016). Effectiveness and safety of oral HIV pre-exposure prophylaxis (PrEP) for all populations: A systematic review and meta-analysis. AIDS, 30(12), 1973-1983. https://doi.org/10.1097/QAD.0000000000001145

Grulich, A. E., Guy, R., Amin, J., Jin, F., Selvey, C., Holden, J., Schmidt, H.-M. A., Zablotska, I., Price, K., Whittaker, B., Chant, K., Cooper, C., McGill, S., Telfer, B., Yeung, B., Levitt, G., Ogilvie, E. E., Dharan, N. J., Hammoud, M. A., Vaccher, S., Watchirs-Smith, L., McNulty, A., Smith, D. J., Allen, D. M., Baker, D., Bloch, M., Bopage, R. I., Brown, K., Carr, A., Carmody, C. J., Collins, K. L., Finlayson, R., Foster, R., Jackson, E. Y., Lewis, D. A., Lusk, J., O'Connor, C. C., Ryder, N., Vlahakis, E., Read, P., Cooper, D. A., Smith, D., Ooi, C., Martin, S., Soo, T. M., Templeton, D., Townson, D., Forssman, B., Doong, N., Han Thai, G., Anderson, B., MacLeod, H., & Parkhill, N. (2018). Population-level effectiveness of rapid, targeted, high-coverage roll-out of HIV pre-exposure prophylaxis in men who have sex with men: the EPIC-NSW prospective cohort study. The Lancet HIV, 5(11), E629-637. https://doi.org/10.1016/S2352-3018(18)30215-7

Holt, M. (2014). Gay men's HIV risk reduction practices: the influence of epistemic communities in HIV social and behavioral research. AIDS Education and Prevention, 26(3), 214-223. https://doi.org/10.1521/aeap.2014.26.3.214

Holt, M., Lea, T., Bear, B., Halliday, D., Ellard, J., Murphy, D., Kolstee, J., & de Wit, J. (2019). Trends in attitudes to and the use of HIV pre-exposure prophylaxis by Australian gay and bisexual men, 2011–2017: implications for further implementation from a Diffusion of Innovations perspective. AIDS and Behavior, 23(7), 1939-1950. https://doi.org/10.1007/s10461-018-2368-y

Holt, M., Lee, E., Lea, T., Bavinton, B., Broady, T., Mao, L., MacGibbon, J., Keen, P., Murphy, D., Bear, B., Crawford, D., Ellard, J., Kolstee, J., Power, C., Prestage, G., Grulich, A., Guy, R., & de Wit, J. (2020). HIV preexposure prophylaxis cascades to assess implementation in Australia: results from repeated, national behavioral surveillance of gay and bisexual men, 2014–2018. JAIDS Journal of Acquired Immune Deficiency Syndromes, 83(3), e16-e22. https://doi.org/10.1097/qai.0000000000002243

Holt, M., Newman, C. E., Lancaster, K., Smith, A. K., Hughes, S., & Truong, H.-H. M. (2019). HIV pre-exposure prophylaxis and the ‘problems’ of reduced condom use and sexually transmitted infections in Australia: a critical analysis from an evidence-making intervention perspective. Sociology of Health & Illness. https://doi.org/10.1111/1467-9566.12967

Jin, F., Crawford, J., Prestage, G. P., Zablotska, I., Imrie, J., Kippax, S. C., Kaldor, J. M., & Grulich, A. E. (2009). Unprotected anal intercourse, risk reduction behaviours, and subsequent HIV infection in a cohort of homosexual men. AIDS, 23(2), 243-252.

Kippax, S. (2017). A journey to HIV prevention research: From social psychology to social health via multidisciplinarity. Journal of Health Psychology, 23(3), 442-456. https://doi.org/10.1177/1359105317707529

Kippax, S., Connell, R. W., Dowsett, G. W., & Crawford, J. (1993). Sustaining safe sex: gay communities respond to AIDS. The Falmer Press.

Kippax, S., Crawford, J., Davis, M., Rodden, P., & Dowsett, G. (1993). Sustaining safe sex: a longitudinal study of a sample of homosexual men. AIDS, 7(2), 257-264. http://journals.lww.com/aidsonline/Fulltext/1993/02000/Sustaining_safe_sex__a_longitudinal_study_of_a.15.aspx

Kippax, S., & Race, K. (2003). Sustaining safe practice: twenty years on. Social Science & Medicine, 57(1), 1-12.

Kippax, S., Stephenson, N., Parker, R. G., & Aggleton, P. (2013, 2013/08/01). Between individual agency and structure in HIV prevention: understanding the middle ground of social practice. American Journal of Public Health, 103(8), 1367-1375. https://doi.org/10.2105/AJPH.2013.301301

Lancaster, K., Rhodes, T., & Rosengarten, M. (2020). Making evidence and policy in public health emergencies: lessons from COVID-19 for adaptive evidence-making and intervention. Evidence & Policy: A Journal of Research, Debate and Practice, 16(3), 477-490. https://doi.org/10.1332/174426420X15913559981103

Lupton, D. (2020). Special section on ‘Sociology and the Coronavirus (COVID-19) Pandemic’. Health Sociology Review, 29(2), 111-112. https://doi.org/10.1080/14461242.2020.1790919

MacGibbon, J., Lea, T., Ellard, J., Murphy, D., Bear, B., Kolstee, J., Crawford, D., Power, C., De Wit, J., & Holt, M. (2019). Attitudes to biomedical HIV prevention among Australian gay and bisexual men: Key findings from the PrEPARE Project 2019. Centre for Social Research in Health, UNSW Sydney. https://doi.org/10.26190/5d92c911db68c

MacGibbon, J., & Smith, A. K. J. (2020). What can the HIV epidemic tell us about COVID-19? Junkee. Retrieved 8/10/2020, from https://junkee.com/hiv-epidemic-covid-19/263302

Madden, A., & Wodak, A. (2014). Australia's response to HIV among people who inject drugs. AIDS Education and Prevention, 26(3), 234-244. https://doi.org/10.1521/aeap.2014.26.3.234

Mao, L., de Wit, J., Adam, P., Post, J. J., Slavin, S., Cogle, A., Wright, E., & Kidd, M. (2018). Beliefs in antiretroviral treatment and self-efficacy in HIV management are associated with distinctive HIV treatment trajectories. AIDS and Behavior, 22(3), 887-895. https://doi.org/10.1007/s10461-016-1649-6

Mao, L., Holt, M., Newman, C., & Treloar, C. (Eds.). (2020). Annual Report of Trends in Behaviour 2020: HIV and STIs in Australia. Centre for Social Research in Health, UNSW Sydney. https://doi.org/10.26190/5f2cd4cd6ffb3.

Newman, C., Hughes, S., Persson, A., Truong, H.-H. M., & Holt, M. (2019). Promoting ‘equitable access’ to PrEP in Australia: taking account of stakeholder perspectives. AIDS and Behavior, 23(7), 1846-1857. https://doi.org/10.1007/s10461-018-2311-2

Newman, C. E., de Wit, J., Persson, A., Holt, M., Slavin, S., Kidd, M. R., Post, J. J., Wright, E., & Mao, L. (2015). Understanding concerns about treatment-as-prevention among people with HIV who are not using antiretroviral therapy. AIDS and Behavior, 19(5), 821-831. https://doi.org/10.1007/s10461-014-0959-9

Newman, C. E., Mao, L., Persson, A., Holt, M., Slavin, S., Kidd, M. R., Post, J. J., Wright, E., & de Wit, J. (2015). ‘Not until I'm absolutely half-dead and have to:’ accounting for non-use of antiretroviral therapy in semi-structured interviews with people living with HIV in Australia. AIDS Patient Care and STDs, 29(5), 267-278. https://doi.org/10.1089/apc.2014.0301

Persson, A. (2004). Incorporating Pharmakon: HIV, medicine and body shape change. Body & Society, 10(4), 45-67. https://doi.org/10.1177/1357034X04047855

Persson, A., & Newman, C. (2006). Potency and vulnerability: Troubled ‘selves’ in the context of antiretroviral therapy. Social Science & Medicine, 63(6), 1586-1596. https://doi.org/https://doi.org/10.1016/j.socscimed.2006.04.001

Philpot, S., Prestage, G., Holt, M., Haire, B., Maher, L., Hammoud, M., & Bourne, A. (2020). Gay and bisexual men’s perceptions of pre-exposure prophylaxis (PrEP) in a context of high accessibility: an Australian qualitative study. AIDS and Behavior, 24(8), 2369-2380. https://doi.org/10.1007/s10461-020-02796-3

Race, K. (2001). The undetectable crisis: changing technologies of risk. Sexualities: studies in culture and society, 4(2), 167-189. https://doi.org/10.1177/136346001004002004

Race, K. (2014). The difference practice makes: evidence, articulation, and affect in HIV prevention. AIDS Education and Prevention, 26(3), 256-266. https://doi.org/10.1521/aeap.2014.26.3.256

Rhodes, T., Lancaster, K., & Rosengarten, M. (2020). A model society: maths, models and expertise in viral outbreaks. Critical Public Health, 30(3), 253-256. https://doi.org/10.1080/09581596.2020.1748310

Siefried, K. J., Mao, L., Kerr, S., Cysique, L. A., Gates, T. M., McAllister, J., Maynard, A., de Wit, J., & Carr, A. (2017). Socioeconomic factors explain suboptimal adherence to antiretroviral therapy among HIV-infected Australian adults with viral suppression. PLoS ONE, 12(4), e0174613. https://doi.org/10.1371/journal.pone.0174613

Smith, A. K. J., Holt, M., Hughes, S. D., Truong, H.-H. M., & Newman, C. E. (2020). Troubling the non-specialist prescription of HIV pre-exposure prophylaxis (PrEP): the views of Australian HIV experts. Health Sociology Review, 29(1), 62-75. https://doi.org/10.1080/14461242.2019.1703781

Watson, A., Lupton, D., & Michael, M. (2020). Enacting intimacy and sociality at a distance in the COVID-19 crisis: the sociomaterialities of home-based communication technologies. Media International Australia, 1329878X20961568. https://doi.org/10.1177/1329878X20961568

Deborah Lupton celebrating the Centre's birthdays

In my short time with the CSRH and SPRC, it has been wonderful to have convened and to lead the Vitalities Lab. We are a small but vibrant team who enjoy working together, making connections inside and outside UNSW and pushing social research in new and exciting directions. Whether it is studying how COVID messages are conveyed on TIkTok, how people are using digital techologies while in lockdown or the face mask as a social and symbolic artefact, we are working to understand the complexities of the post-COVID world. https://vitalitieslab.com/

Growing up in a social research centre

A few weeks into the 21st century, my life changed when I was offered a place in the PhD program at the National Centre in HIV Social Research, later to be known as the Centre for Social Research in Health.

I was 24 years old, with a passion for change and a commitment to learning, and little idea how to turn either of those into a workable life.

After more than two decades of study and work at CSRH, I am incredibly grateful for the serendipity that landed me in this unique environment, at that particular time.

Here is just a little of what growing up in the Centre for Social Research in Health taught me:

How to be multidisciplinary; learning from rather than being threatened by the incredibly different ways of thinking about what is real and what is knowable valued by different traditions of inquiry

How to respect lived experience; believing deeply that communities are the experts in and on their own lives, and must be respected, listened to, and responded to in policy, practice and research

How to work in a team; making myself fully open to the pain and wonder of changing course, writing it all again, and rethinking the end goals, knowing this will always lead to better outcomes than if I tried to do everything alone

How to challenge my assumptions; never taking for granted anything I think I might innately or empirically ‘know’ about how people make sense of and attend to health, risk, pleasure or care

How to make things happen; working across multiple projects to achieve ambitious goals within impossible timeframes, delivering high quality outcomes without forgetting to look out for each other throughout

How to be both critical and optimistic; recognising that the systems which entrench social exclusion and disadvantage must change, but that communities already have the tools they need to achieve that

How to forge and drive collaborations: finding ways to connect the interests of researchers, advocates, clinicians, health promoters, and policymakers to mobilise the strength that comes from aligning diverse perspectives and agendas

How to be both of and for community; bringing my experience of queer life to my commitment to advancing the rights and wellbeing of communities affected by stigma, prejudice and marginalisation

How to recognise ethical and moral leadership; learning how to identify those who align their personal and professional politics, who support and lift up those they are leading, and use their privilege to achieve change as well as influence

How to honour strengths; recognising the harms caused from uncritically reproducing narratives of risk, lack and failure and the gains achieved from uncovering narratives of competency, asset and strength

How to find a new voice; bringing your own biography into the world of research, to develop a new way of writing which helps to dismantle the restrictive binary between personal and ‘scientific’ voice

How to be a human and an academic; working out how to juggle my various commitments to loved ones, students, and colleagues, knowing that a balance is possible because I see others making it work

A major achievement of the program of social research at CSRH has been the range of studies documenting the stories of groups hidden from the broader HIV response. For example, Dr Asha Persson and Associate Professor Christy Newman led the following key projects in collaboration with affected communities:

  • Heterosexuals living with HIV: The Straightpoz study (led by Asha Persson) led to greater acknowledgment of this hidden group by services, researchers and policy-makers. It also greatly informed policy direction and program development for the Heterosexual HIV Service NSW (Pozhet), the key community partner on this study for nearly 7 years (2004-2010). In addition to research reports and multiple academic journal articles, the findings formed the basis of several resources produced in collaboration with Pozhet, including an HIV awareness video targeting heterosexuals (“HIV is Still Here”) for World AIDS Day 2009; health promotion pamphlets for newly diagnosed heterosexuals and for health care workers, which were widely circulated and used as a model by HIV organisations in Australia and overseas to develop similar resources; and a booklet for couples with mixed HIV status (Life, Loving and HIV).
  • Children and young people growing up with HIV: The PozKidz study (led by Asha Persson and Christy Newman) was partly funded by the inaugural Gilead Fellowship in 2013 and conducted in collaboration with the Paediatric HIV Unit at the Sydney Children’s Hospital. A key aim was to understand the issues and challenges facing children growing up with perinatally acquired HIV in Australia, as well as the clinicians and families who care for them, as they transition from childhood to early adulthood and from paediatric to adult care. The study generated interest from its inception due to its contribution of important insights to the literature on this emerging population in the epidemic and to the sociology of health and illness, including theories of stigma. Indicative of the perceived value and relevance of social research beyond academic and disciplinary boundaries, we were invited to present our findings at a Sydney gathering of international paediatric HIV clinicians, and to speak to local HIV clinicians and social workers. The study also led to collaboration with researchers in the USA working in this field.
  • Couples with mixed HIV status: YouMe&HIV (led by Asha Persson) explored the social, sexual and medical management of HIV among “serodiscordant” gay and heterosexual couples in NSW between 2012 and 2016. This study was funded by the NSW Ministry of Health and conducted in collaboration with a number of research centres and community organisations. A focus of this study was to understand how the evolving landscape of HIV medicine, particularly new biomedical responses to the HIV pandemic, intersect in pivotal ways with an existing range of sexual practices and cultural meanings around HIV, as well as give rise to new forms of intimacy and perceptions of HIV risk among serodiscordant couples. Findings from this study contributed to social science insights about gender, illness and medicine in the context of intimate relationships, and to contemporary public health debates about HIV prevention for serodiscordant couples.
  • Straight-identified men who have sex with men: The StraightMSM project (led by Christy Newman) aimed to understand the experiences of heterosexually-identified men who have sex with men, a group largely hidden from policy and public attention because they are seen to confound social expectations of the alignment between sexual identity and practice. The project was funded by the NSW Ministry of Health (2015-2016) and the report and articles from this study (published in Men and Masculinities and Sexuality Research and Social Policy), generated considerable policy interest. The study team was invited to contribute to an NSW Health working group to increase HIV testing among this difficult-to-reach population. This led to a radio, television and poster campaign, which was directly informed by our research findings, and aimed to raise awareness among clinicians of the need to avoid making any assumptions about who might be at risk of HIV on the basis of their sexual identity or social roles.
  • Families affected by blood-borne viruses: The My Health, Our Family (led by Christy Newman) is funded by an ARC Discovery grant (2016-2020), and is the first of its kind in Australia and globally to widen the lens of serodiscordance beyond the usual focus on couples to include families living with mixed HIV or viral hepatitis status. Making serodiscordance more inclusive is an important step in recognising and drawing much needed attention to the diverse ways families’ everyday lives, relationships, and futures can be entangled with these viral infections. Despite biomedical advances that have reduced manifestations of these blood-borne viruses and transmission risk, social stigma remains a persistent issue. Families play a critical role in supporting those who have been diagnosed and responding to the health and social implications of these infections. But we have seen little recognition of their experiences and potential support needs. Thus, this study aims to understand the relationality of a diagnosis and how it can affect partners, parents, children, siblings and other people identified as “family” by study participants.
Jake Rance celebrating CSRH's 30th Birthday

Since joining the CSRH in late 2008, it has been my privilege (and pleasure) to have been involved in a number of highly successful and productive collaborative ventures. Despite fierce competition, my favourite remains ‘CUPID’, a three-year project funded by the National Health and Medical Research Council. CUPID was a solely qualitative, interview-based study, involving forty couples who inject drugs recruited across Sydney and Melbourne. CUPID gave me a rare opportunity to sit with and listen to the often intensely personal stories of participants as they reflected on their experiences of intimacy, relationships and drug use. It also afforded me the chance to think and write with some of leading researchers in the field, including Professor Carla Treloar (Director, Centre for Social Research in Health & the Social Policy Research Centre), Professor Suzanne Fraser (Director, Australian Research Centre in Sex, Health and Society), Professor Tim Rhodes (‎London School of Hygiene and Tropical Medicine) and Associate Professor Joanne Bryant (Centre for Social Research in Health). I believe CUPID exemplified some of the very best of what social research affords; research that is ethical, innovative, conceptually-informed, rigorous and relevant.

Clare Southerton celebrating the Centre's birthdays

CSRH and SPRC have long histories of community engagement and making research findings accessible. In the current climate there’s so much uncertainty and the public is looking for advice. There’s a lot of misinformation and contradictory information, but a great way for researchers to respond to this environment is to contribute clear, informed and accessible advice. Encouraged by the great work already being done by researchers in CSRH and SPRC, I wrote an article for The Conversation about the public shaming of “super-spreaders” that now has over 20 000 reads. I feel proud of this contribution and proud to be a part of CRSH and SPRC, continuing this history of outreach.

Reflections from our students

Sujith Kumar celebrating CSRH's 30th Birthday

I wanted to study at CSRH because of its longstanding commitment to working closely and ethically with communities, government agencies and the non-for-profit sector, and because of its enviable international reputation for rigorous and socially-engaged scholarship at the intersections of health, sexuality and human rights. 

Studying at CSRH has meant that I get to learn from, and publish with, leading scholars in sociomedical research, many of whom have shaped their respective fields. I have been blown away by how sincerely inclusive, curious, respectful and friendly everyone has been, and I feel deeply accepted, valued and supported, professionally and personally. And it also means I get to enjoy amazing Sydney!

I’m hoping to use my PhD from CSRH to continue exploring the social worlds and unmet social needs of vulnerable and socially marginalised communities in Australia and beyond. 

Anthony K J Smith celebrating CSRH's 30th Birthday

Studying at CSRH has enabled me to work with international leaders in HIV social research and contribute to Australia’s longstanding partnership response to HIV. Having worked firsthand with PrEP at the WA AIDS Council’s M Clinic, I relocated from Perth to Sydney to pursue my current doctoral research at CSRH: ‘PrEP in Practice: Clinician Perspectives on Prescribing PrEP in Australia’. I have also had the opportunity to collaborate on CSRH research projects, including the ‘My Health, Our Family: Documenting Stories of Family Life in the Context of HIV, Hepatitis B or Hepatitis C’ and the ‘Trust in Digital Health’ studies.