Researching peer-led responses

Researching peer-led responses: Reflections on 20 years of collaboration, advocacy, and creating change

Introduction (6:11)

It’s quite a privilege to be here today. I really, really do appreciate it.

Before I start, I would like to acknowledge the Traditional Owners of the land that I’m on. I pay my respects to elders, past and present. I also acknowledge this presentation is being seen across many other lands in Australia. So, I also pay my respects to elders across those lands.

Today I have the privilege of reflecting on 20 years of collaboration with community and peer-led organisations. So, in light of that, I’d also like to acknowledge the contribution of community to that research, and to the whole response.

People living with HIV and hepatitis C — and many other communities that I’ve worked with — have actually been a core part of the Australian and the international response to HIV and hepatitis C. We owe a lot to their contributions. And the global response owes a debt of to the courage, strength, and determination of these communities.

COVID-19 (7:14)

What I’m going to talk about first will just touch on COVID-19. Then I’ll go into the experiences I’ve had.

Responses to viral pandemics are regularly medicalised, criminalised, and stigmatised when viruses, by their very nature, are social and community based.

Viruses may not discriminate, but we’re in a world where transmission is highly discriminatory.

We only need to look at the recent data from Melbourne with COVID-19 showing how the most disadvantaged suburbs are massively over represented.

Scratch the surface and we see a mix of insecure employment and housing, gender inequality, racism and structural neglect.

These are systemic issues that not only enable an epidemic but also sustain an environment in which mobilised community responses have to work so much harder for so much longer.

It’s with this idea of systemic barriers and enablers in mind that I’d like to reflect on my own experiences with the community-led response to HIV and hepatitis C.

Peer-led responses — Collaboration throughout a pandemic (8:21)

Peer-led responses, community mobilisation, advocacy, and health promotion have been central characteristics of Australia’s response to HIV and hepatitis C.

In fact, the first guiding principle of the HIV and hepatitis C strategies in Australia is the meaningful involvement of priority populations.

I’m going to use the terms ‘peer organisation’ and ‘peer response’. But I mean that in a very broad sense to mean both community-based and peer-led organisations and networks.

Peer organisations have continuously adapted with their communities to improve health, wellbeing, and the rights of communities.

Their ability to simultaneously engage with community and policy systems and be nimble and flexible in responding to very politically volatile environments has been a hallmark of these organisations.

It’s this knowledge, experience, and insight that underpins the collaboration between peer organisations and researchers. However, peer involvement in research — be it clinical, social, health services, evaluation or implementation research — is often limited to consultation, recruitment, and reporting back.

These are important. But the discussion has generally been limited to the methodology and good practice, rather than looking at the broader system- and structural-level factors.

A journey (9:41)

So today, I’d like to take you on a little bit of a journey through my research collaborations.

I’ll draw on my early experience in peer and community mobilisation at the WA AIDS Council and then my research collaborations at Curtin Centre for Health Promotion Research and also at ARCSHS here at La Trobe.

However, I do promise, I will not be presenting any complex system maps or any heavy statistics or any high theory.

I also warn you: there are some old photos. And I realise how few photos I have of me that are work related where I’m not actually at a conference.

But let’s start.

Peer work at the WA AIDS Council (10:23)

The Freedom Centre (10:23)

When I became first involved in HIV, it was actually less to do with HIV and more with being a peer advocate for young people and doing peer outreach at 23.

I was part of the group that established the Freedom Centre, Australia’s first peer-led centre for same-sex-attracted and gender diverse young people.

When I was diagnosed with HIV at 25, reaching the age of 40 (which seemed a long way off) was considered very unlikely. Tomorrow I turn 50.

So my work with the Freedom Centre was also an introduction to the gaps in:

• Evidence to advocate for our work
• How some research issues were systematically avoided or ignored by policy and funding

The importance of peer perspective (11:09)

It was at WAAC that embedded in me the understanding of the role of a peer perspective in:

• Making evidence
• Interpreting evidence
• Navigating evidence
• Advocating for evidence

My time at WAAC also provided me with insights on some of the personal challenges of researching your own community as a peer.

The personal challenges of the research content.

The simultaneous insights and biases.

Especially when the evidence was different to what you believed to be true, and perhaps that peer program wasn’t as effective as you hoped. Or at 2am on a podium at Connections Nightclub and suddenly someone is correcting my statistics.

Growing frustration: Limited local, peer-led data (11:51)

In time, I became manager of the peer programs at WAAC, working with people living with HIV, communities of gay and bisexual men, people who use drugs, sex workers, and young people.

I did present a number of times at a number of national conferences and policy settings on my frustration that research was too distal from on-the-ground practice.

I was also frustrated at the limited evaluation within our programs that made us really vulnerable.

In an effort to ensure WA had local data, I do recall in my 20s convincing the WA Department of Health to let the AIDS Council do the Gay Community Periodic Survey itself, rather than the national centres. I was confident we could do it for the very limited funding that was available.

This was actually my introduction to national research centres …

Collaboration with researchers (12:44)

… where my name was associated with the difficulties of nationally coordinated research agenda.

I think the phrase that came back to us was: ‘This Graham Brown is trying to ruin everything!’

I help things enormously by responding to the national centres saying, ‘Oh, over east, is there a research agenda?’

So, my beginnings with collaboration with researchers were off to a really great start!

But the reality is the huge and unfunded support I received for that study in Perth from the now Centre for Social Research and Health, Kirby Institute, ARCSHS, and Burnett was huge.

It made the fledgling ‘Perth Gay Community Periodic Survey’ possible.

The practical, free support that research funds and infrastructure today are no longer able to support, which I’ll come back to later…

But what we saw emerging across Australia was community and research creating change together — and the community that held that HIV and hepatitis c research to a very high bar.

Despite that, while I was at WAAC, I continued to complain about research. So much so that my colleagues at WAAC convinced me to stop whining and go and do something about it.

So, I joined what was then the WA Centre for Health Promotion Research at Curtin University.

WA Centre for Health Promotion Research, Curtin University (14:09)

I had the opportunity to expand my work to other community and peer-led programs led by young people — this included migrant young people, Aboriginal young people, rural, as well as LGBTQ young people — and expand my topics into mental health promotion, sexual health, drug use, marginalisation, and social connection.

It was here that my colleagues and I collaborated with a range of community organisations to develop what we referred to as ‘My Pit, My Peer’, a broad program where we started to expand the understanding of what is useful evaluation and evidence for peer-led programs.

We also collaborated with AFAO and a number of AIDS Councils to do some of the first research into peer outreach in online chat rooms. (Yes, chat rooms. Remember them?)

Curtin enabled me to have some incredible opportunities to maintain my research, my advocacy, and my connection with communities. And it supported me to take on the role of President of AFAO, the first West Australian to do so.

I also saw the value of recruiting more and more people from the community sector and peer organisations into these research programs. So much so that I was actually advised by WAAC that I could not speak to staff any further unsupervised, as they kept ending up being poached by my research centre to work with me.

I absolutely stopped doing that at ARCSHS…

Australian Research Centre in Sex, Health and Society (ARCSHS) (15:39)

…except for Kylie, Daniel, Tim, Petrina, and a few others.

But when I did move to ARCSHS, I was still navigating that sort of community-advocate research divide.

I do recall my first day at ARCSHS close to 10 years ago. The Director, Marion Pitts, had a letter from the President of AFAO (me) strongly criticising the research priorities of the national centres.

That was my first item on my first supervision meeting with my new director.

But the reality was there was enough history, trust, and respect between AFAO and the community sector and the research centres that these sorts of discussions and debates could happen openly and assertively, and did lead to better outcomes.

The What Works and Why (W3) and PozQoL Projects (16:26)

At ARCSHS, I had the privilege to focus on the theory, practice, and evaluation of peer-led responses.

Over time, this came to be known as the What Works and Why (or W3) Project.

W3 was about finding a new way to describe the full role of the peer-led responses and supporting that response to build its own useful evidence.

This was when we took our collaborations from across Australia on what actually became a five-year journey into complex adaptive systems. This was a huge undertaking, requiring high levels of trust and commitment from the collaborators.

The W3 Project required peer staff and researchers to take simultaneous roles of driving the research  and as participants, analysts, and advocates. And organisations were willing to go on that journey without a clear result in sight.

There’s plenty of published and presented details on the outcomes of W3 so far. A new W3 Guide and website are underway.

In the next stage, we’ll be pooling resources and data, aiming to build the first nationally consolidated evidence base on selected peer programs.

The momentum of W3 also enabled community, clinical, and research collaboration that resulted in PozQoL, the quality of life scale for people with HIV for use in day-to-day health and community services. That collaboration has now resulted in a scale that’s an indicator for the national strategy, being used across community clinical settings, and translated into 11 languages.

Lessons learned from researching and collaborating with peer-led responses (18:00)

Through my work at ARCSHS, I’ve been afforded amazing opportunities to collaborate with, and advocate for, community responses across Australia and internationally.

Also, I’ve had opportunities that I have been able to draw on and learn a whole range of lessons.

So, over those 20 years with my many collaborators and colleagues, I’ve come to an understanding of collaboration and research, and the benefits, barriers, and enablers.

I’d like to share some thoughts on those.

Benefits of genuine collaboration between research and community (18:29)

First, let’s have in mind some of the benefits of true genuine collaboration between research and community.

I’m not going to summarise the evidence of how collaborative research enhances the outcomes of projects, ensuring they are accurate relevant, meaningful, and persuasive. That’s well described elsewhere.

What I have found is that investing in sustained collaboration strengthens both peer organisations and research centres.

For peer organisations, collaboration across organisations has increased peer staff confidence and trust in collaborating, negotiating, and pushing back with researchers. These peer staff are better equipped to influence the broader research agenda.

The key here is the influence on research is broadened beyond senior peer staff to all peer workers.

Building their own peer leadership and influence — having a range of peer advocates confident in their own voice on research — strengthens the peer response’s capacity to ensure that that research is effective.

For research centres, investing in sustained collaboration demonstrates credibility and authenticity within the community sector and their communities.

This strengthens the research centre’s other work, such as insights for research priorities, engagement with community participants, endorsement of study results, and advocating for research investment.

The engagement and ownership of collaborating organisations was key to the funding of W3 and PozQoL. Our collaborators can often advocate for research far more convincingly than researchers can.

Barriers to collaboration between research and community (20:13)

There are, however, three barriers I’d like to touch base on.

The funding of peer organisations can be misaligned with their role in collaborating in research (20:20)

First of all, the funding of peer organisations can often be quite misaligned with the commitments they’re trying to make.

The peer-led response is embedded in the communities they participate with, and the policy and research environment in which they operate and collaborate.

Navigating this complex policy and research system is a key component for peer organisations’ own influence. However, system-level influence is generally not part of their service, programs, or funding.

For example, maintaining a strong pool of influential peers and volunteers is essential for peer organisations to engage with their communities. Less recognised is that these peers are also crucial to effective long-term partnerships, and are essential to any sort of meaningful participation in research.

Peer leadership does not neatly fit into activity-based funding models. There’s a risk that building capacity in research may sometimes be interpreted as advocacy, which many funding agreements explicitly, and mistakenly, prohibit.

While this is not a new challenge, the impact on sustaining meaningful involvement in research is less recognised. When government funding reduces the capacity and influence of peer leadership, it’s undermining its own investment in effective, trusted, and timely research. And COVID-19 has shown how hard it is to scale up community relationships and research quickly.

Peer leadership draws on communities already under pressure (21:52)

The next one is around peer leadership drawing on communities .

A strength of peer organisations is their participation within their communities, including the tensions and challenges. However, this adds another layer of complexity.

Peer staff are drawn from communities under pressure from marginalisation, discrimination, criminalisation, and racism. Many of these communities have higher rates of health complications, mental health challenges, and interaction with the legal and justice system.

Peer organisations have demonstrated incredible resilience and innovation. However, these experiences impact on flexibility, time, and energy.

Co-design and action research takes significant resources. And there’s an emotional cost to playing the triple role of being a collaborator, facilitator, and a subject of research.

It takes resilience to overcome reluctance. To invest all those limited resources into research when past experiences may have been tokenistic or stigmatizing. Or even just the effort of having to orient and acclimatise each new researcher. Identifying and then selecting which research is both trustworthy and worth the opportunity cost takes time.

When a community organisation promotes a poor study to their community, it’s the community organisation that bears the most brunt and reputational risk.

I think the research review panels such as those at Thorne Harbour and ACON have a really important role in managing this.

Investment of time and resources does not guarantee benefits (23:39)

The last one I wanted to touch base on is that investment of time and resources doesn’t guarantee benefits.

For peer organisations, the benefits of investing in research are often not immediately visible or demonstrable. The promise of future benefits needs to be balanced against the need for visible, short-term outcomes demanded by both communities and funders.

For example, the short-term benefits of the W3 project were not uniformly experienced across the organisations. In Stage 1, we had ten peer organisations working with us to develop the W3 Framework. However, in Stage 2, we only had the resources to work with two peer organisations on applying that framework.

The long-term benefits of W3 Project for the broader peer sector are only now emerging — and are yet to be fully achieved — some years after those organisations first participated.

For research institutions, meaningful participation may be viewed as adding additional layer of time and resources to research.

In the short term, meaningful collaboration can mean a focus on tailored outputs (such as community reports and briefings) or commitments to the sector (such as presentations, workshops, and training about applying the results). This can result in delays to outputs that are more valued by academia.

For example, the W3 Project’s methodology, with an emphasis on participation and reflexive, practice-based outcomes, limited the project’s capacity to translate that research quickly into peer-reviewed journal papers.

The broader structures that drive research funding don’t necessarily place the same value on the time and resources required to maintain long-term collaboration and ownership.

Enablers — Role of researchers in enabling peer- and community-led responses to fulfil their role (25:32)

The resources that enabled the HIV research centres to mentor and support me to lead studies in WA when back when I was in my 20s and 30s are greatly diminished. They’re no longer part of most research investments.

Research centres are more stretched than ever. The short-term funding and increased ‘casualised’ workforce of universities undermines sustaining long-term relationships.

I am very concerned that these sorts of pressures will be increased significantly over the coming years because of the impact of COVID-19 on universities and research investment generally.

However, let’s think a bit more positive. I think there are actions we can pursue to counter these sorts of barriers and build an environment that enables community and research partnerships to continue to thrive.

I’d like to share just three of these.

Ongoing demonstration of two-way trust and commitment (26:25)

The first one is around the demonstration of two-way trust and commitment. The establishment and maintenance of trust and commitment in a research collaboration is crucial for a study to remain flexible.

In studies like W3 — as well as the Peer Insights Project with people use drugs or the PozQoL Study with people with living with HIV — the researchers trusted the expertise, experience, and perspective of peer staff, while the peer staff trusted the commitment and authenticity of the research team.

This included the researchers sharing ownership of the research direction, the analysis, and the outcomes. Researchers demonstrating an environment where ideas could be openly discussed and challenged meant peer staff didn’t have to overcome a unified view of researchers (or vice versa). All these were part of forming a shared view from the beginning.

This doesn’t happen overnight. This trust and commitment needs to be beyond the life of any single project. It needs to be enabled, reinforced, and demonstrated at an organisational level — not just at an individual researcher or individual peer staff level.

Visible valuing of peer participation and leadership to counter system-level stigma (27:37)

Another one I’d like to talk about is visibility.

Insights from peer organisations are often a source of real-time knowledge about emerging community issues. Peer organisations are very aware of the power differences between voices and opinions across policy, health service, and community sectors.

In the W3 Project, we showed that for peer organisations to have meaningful influence in research and policy: Yes, they need to have deep engagement with their communities. They need partnership across the sector and sophisticated analysis of emerging issues. But they also need an environment that values their insights. This requires allies across research, policy, and health services who not just collaborate and share knowledge back and forth, but who visibly and vocally value, believe, and act on peer insights and advice.

Our communities have achieved great things by being at the table. However, significant advocacy is required to maintain the expertise from gay and bisexual men, people with HIV and hepatitis C, Aboriginal and Torres Strait Islander communities, sex workers, people use drugs, and migrant communities at the table. And that table is not equal across those groups.

We found in W3 that relationships, partnerships, and alliances that are visible and vocal enhance the recognition of the peer voice and can challenge institutionalised stigma.

Flexibility in research funding, resources, and project management (29:08)

The last one I’d like to talk about is around flexibility in funding.

The W3 Project was funded by the Australian Commonwealth Department of Health as part of strategic investments in the national strategies. The nature of the fund allowed significant flexibility to incorporate meaningful participation and make a multi-year commitment to our collaborators.

This sort of funding shouldn’t be viewed as a privilege, fortunate, or rare. It should be viewed as good practice.

To achieve this flexibility and adaptability in research funding requires advocacy.

Something that can often be underestimated is the influence of research and community advocating together. The role and influence of the community sector in Australia to advocate for targeted and effective research investment and policy is often underestimated, particularly within broader university structures. I think we need to value this reciprocal goal far more strategically.

Concluding remarks (30:08)

Adaptation during COVID-19 (30:08)

I started with some comments regarding COVID-19. While our community and peer-led response and our research response are under significant pressure, we should also reflect on how quickly we were able to adapt and adapt confidently.

Why is it that the community response born out of HIV and hepatitis C has been one of the areas to respond and adapt and be influential so quickly with COVID-19?

Is it the pre-existing relationships across community, health systems, research, and policy? Was it the willingness to not just listen, but to trust — or at least be convinced — that the community knew what it was doing? A preparedness for the unexpected? And the connections and confidence and audacity to take action, but also to have that action supported and trusted? Was it the understanding that, to rapidly scale up a community response, you need to have already invested in community trust, relationships, and infrastructure some time before?

These are all elements that underpin our current strengths in the Australian response to HIV and hepatitis C. COVID-19 has shown how important and vulnerable they can be.

Allies (31:24)

We often talk about partnerships and collaboration frameworks and I’m starting to rethink these a bit.

In research fields, often, being an ally is seen as the culmination. The goal. It’s certainly better than the alternatives, which you might consider to be acceptance, acknowledgement, or even avoidance. However, I would argue ‘ally’ is really the minimum. The starting point.

If I’ve learnt anything, it’s that what we really need in today’s climate is more than allies. If we’re in this together, then we need fellow advocates — accomplices — or preparedness to be a whole lot more audacious.

Collaborations of research and community are more than good, evidence-based methodological decisions. Collaborations are a political decision grounded in human-rights principles. They are transformative. And we should not shy away from this.

A political decision and an evidence-based decision can be the same thing. And in today’s climate, collaboration and evidence are political.

A new chapter and so many to thank (32:31)

In October, I start a new chapter as I move to the Centre for Social Impact. I’m really looking forward to maintaining many of the collaborations and friendships I’ve built and starting new adventures and, hopefully, being more audacious.

I started to actually make a thank you list, and it suddenly got to over 50 people, so that wasn’t going to work.

So, I’d like to thank the many people and institutions who have not just supported me but supported what we’ve all been working towards.

I’d like to thank the community and peer organisations in Australia and elsewhere who trusted me and collaborated in the studies and even advocated for me; I’d like to thank the funders and investors who saw the value in what we put forward even when we were uncertain; I’d like to thank the community members who participated and trusted the endorsement of their own peer organisations to participate within our studies.

And I’d also like to thank the one person who was there when the journey first started and even before. Who’s been there throughout my highs and lows, frustrations and joys, and my very blurred work-life boundaries. My husband David. Thank you, David. Thank you very much.

And thank you everyone for participating today.

Thank you.