This article first appeared on the website of Pacific AIDS Network here. Republished with permisision of the author. Folllow PAN on twitter at @PAN_CBR 

Moving research on new “biomedical” HIV prevention technologies into practice

By James Wilton

Recent research findings have improved our understanding of HIV transmission and prevention and could change the landscape of our response to the HIV epidemic. In the past few years, several new HIV prevention approaches, such as post-exposure prophylaxis (PEP), pre-exposure prophylaxis (PrEP), and the use of antiretroviral treatment as prevention, have been found to reduce the risk of HIV transmission. These new strategies are often referred to as new “biomedical” HIV prevention technologies, or NPTs.

If moved into practice in an appropriate way, these new approaches could have a dramatic impact on the HIV epidemic in Canada and other parts of the world. However, translating this research into a reduction in new HIV infections within the communities we work with will be challenging. Community-based organizations (CBOs) – through programming and research – will have an important role to play in understanding these challenges, overcoming them, and effectively implementing these approaches.

Engaging people and communities in new HIV prevention approaches

At the most basic level, we know that the more people in a population who use a specific strategy, the more HIV transmissions they can potentially prevent. The number of people who use a strategy, often referred to as uptake or adoption, will depend on a number of factors, such as awareness (do people know about it?), acceptability (do people want to use it?) and availability (can people access and afford the technology if they want to use it?).

The impact of these strategies will also depend on “who” in a population uses them. More HIV transmissions will be prevented if the strategies are adopted by individuals who are at highest risk of HIV transmission, such as those who don’t use condoms consistently or share injection drug use equipment.

Focusing uptake among those at highest risk may be important for another reason. There is a concern that some people using these new approaches may feel a false sense of security and increase their risk behaviour, such as using fewer condoms or having sex with more partners (a concept known as risk compensation or behavioural disinhibition). Since none of these new strategies are 100% protective, this could potentially offset some of the benefit of NPTs and limit the number of HIV infections they prevent. However, the potential impact of risk compensation will be lower when used by people who are already at higher risk of HIV transmission.

Community-based organizations will play a key role in engaging individuals and communities and facilitating the appropriate uptake of these technologies. This will involve:

• Community mobilization to build readiness for new approaches and address barriers that may affect their acceptability, such as stigma and social, cultural, and political norms.
• Outreach and educational campaigns to improve awareness of these strategies, including information on who they are appropriate for and where they can be accessed, particularly among those at highest risk for HIV transmission.
• Accurate risk assessments for those who are interested in using these approaches and, if appropriate, referral to locations where they can be accessed.
• Community planning to ensure NPTs are provided in a way that respects human rights and supports informed decision making by the people using them.
• Advocacy to ensure the technologies are available and affordable.

Community-based research (CBR) will be essential to gain a better understanding of the acceptability, awareness and availability of these technologies in the community, the barriers to adopting them, and the characteristics of those who are using them.

Packaging new approaches with other strategies and supports

Among those who do use these strategies, what will influence the effectiveness of NPTs at reducing HIV incidence?

How consistently and correctly these strategies are used will be important. Research shows that these new approaches – such as post-exposure prophylaxis (PEP), pre-exposure prophylaxis (PrEP), and the use of antiretroviral treatment as prevention – are much less protective if not used consistently. Correct use means different things for different strategies. However, as none of these new approaches are 100% protective, correct use generally means that these new approaches are combined with, instead of replace, existing HIV prevention strategies.

Furthermore, the presence of certain biological factors that are known to increase HIV risk, such as sexually transmitted infections (STIs), may reduce the effectiveness of these new approaches. Therefore, correct use of these strategies also means combining them with STI prevention, testing, and treatment services.

In research studies and clinical trials, these NPTs have been credited with dramatic reductions in HIV incidence and this has generated a lot of excitement. For example, the HPTN 052 study found that antiretroviral treatment reduced HIV incidence among heterosexual serodiscordant couples by 96%.

However, we may not see the same large reductions in incidence in populations using these strategies in the “real world,” outside of a clinical trial. In clinical trial settings, participants are provided with ongoing prevention and support services including free condoms, HIV testing, STI testing and treatment, and intensive adherence and risk-reduction counselling. All of these services help to create “ideal” conditions that can maximize the impact of an HIV prevention strategy on HIV incidence. These new approaches may be less effective outside of a clinical trial if they are not provided in combination with these additional support services.

Community-based organizations will play an important role in packaging new prevention approaches with additional strategies and supports. This will include:

• Adherence support to help people integrate these strategies into their daily lives and use them consistently.
• Education on how to use the strategies correctly, including information on their advantages and disadvantages compared to existing approaches and the factors that may reduce their effectiveness.
• HIV prevention and risk-reduction counselling to help people understand their HIV transmission risk while they are using a prevention technology and to help them adopt additional HIV and STI prevention strategies. This will also need to include linkages and referrals to other services needed by people at risk of HIV infection and transmission.

Again, community-based research can play an important role in providing  insight into how people are using these strategies in the “real world” and the barriers to using these strategies consistently and correctly.

The role of CBOs and CBR in the changing HIV prevention landscape

The HIV prevention landscape is changing and CBOs have an important role to play in ensuring NPTs are used by the “right” people, at the “right” time, in the “right” context, and in the “right” way.

However, there is an increasing concern that the introduction of these technologies, particularly those based on antiretrovirals, will “medicalize” HIV prevention and reduce the role of CBOs in the response to the HIV epidemic. This is because most “biomedical” NPTs can only be obtained from a healthcare provider and need to be combined with ongoing medical services, such as laboratory and clinical monitoring, HIV testing (in the case of PEP and PrEP), and STI testing and treatment. Therefore, the worry is that these new “biomedical” approaches will shift the setting of HIV prevention from the community to the clinic.

In reality, it’s clear that these new prevention approaches are not exclusively “biomedical” and need to be packaged with several non-clinical services in order to prevent risk compensation, promote their appropriate uptake and sustained use, and ensure they are effective outside of a clinical trial setting. These are services that many healthcare providers do not have the time, knowledge, or expertise to provide effectively and, therefore, represent a gap that CBOs need to fill.

Moving forward

Dr. Kevin Fenton of the Centers for Disease Control and Prevention (CDC) in the United States gave a presentation at the 2012 International AIDS Conference in Washington where he discussed the implications of this new research for CBOs. He called upon CBOs to adapt to the changing HIV prevention landscape by:

• Learning new skills (improving their science base and understanding of clinical trial results).
• Developing new clinical alliances (improving their ties with organizations and institutions where these prevention technologies can be obtained).
• Providing new clinical and prevention services (offering HIV and STI testing, adherence support, and risk-reduction support).
• Promoting the uptake and correct use of these technologies (developing accurate, tailored, context-specific information; ensuring messages reach their target populations through a variety of different mechanisms, such as peer–peer outreach).

James Wilton is the Coordinator of CATIE’s Biomedical Science of HIV Prevention Project, he can be reached at This email address is being protected from spambots. You need JavaScript enabled to view it. .

One of the interesting features about the grant that we received was that this was a “capacity-building fund.” Capacity building is really about acquiring resources – in this case knowledge, skills and networks – that give a person or organization the ability to do something new. In this case that ‘something’ is the ability to conduct community-based research (CBR). 

I believe that having some basic understanding of research methods and process is important, because it empowers people to be able to evaluate incoming information. This goes hand in hand with scientific media literacy.  In the information-age where we are absolutely inundated with information, including news about latest research findings, the ability to understand research methodology is an important skill. It helps prevent people from misunderstanding research findings or from being “taken” by false claims.  But for organizations, the capacity to conduct community-based research is even greater than that - it creates the ability to learn more about the community’s needs and create closer connections and relationships with them. In fact, the research process itself can be a gateway to empowerment among the client population.

People living with HIV have been studied a lot! Bob has written about this before.  Anyone who has been living with HIV for any length of time is no stranger to research.  And the experience is not always a positive one. In fact, the traditional approach to research is reminiscent of colonialism: a research team enters a community, takes what they need, and leaves, without the community ever directly benefiting from the study.

CBR is a fairer approach to research. It recognizes that research should be a mutual exchange of knowledge, hence the emphasis on knowledge translation (making the findings accessible to people who may not be academics or experts in the field themselves) and exchange (understanding that both parties have something to share, which is different from knowledge dissemination - a unidirectional flow of information).

CBR also ensures that the community being studied is empowered to participate in the research process, in some ways perhaps even having the opportunity to participate in the research design and/or ownership of the data. Because CBR is intended to be inclusive of the community-being studied, it is, in a way, very similar to the principles behind GIPA, suggesting that the community should be involved in the research that potentially impacts their lives. 

Understanding and employing these features has been a wonderful experience and, I believe, an excellent learning process for us at ACG. It has allowed us to execute many of the principles we aim to employ in other areas of the organization to a new goal and process. I believe it has also been a positive experience for our research participants.

Another feature worth mentioning is our experience in having a Peer Research Assistant (someone living with HIV) work on the project. Our peer research assistant, as part of our Working Group, conducted many of the interviews. However, he wasn’t just an interviewer. He helped with the research & methodology design and contributed in many ways, making sure that the interview schedule captured or addressed key issues. He urged us to address issues related to HIV beyond the disease, remembering the impact of trauma and other life experiences, and the way they intercepted with HIV.

He was not the only person living with HIV involved in the research, but I believe that his relationships with ACG clients allowed the study to gain credibility among our client population. Having a peer research assistant who is well connected and respected in the community provided a gateway to having participants trust in the process and open up about incredibly intimate issues. Peer research assistants have to maintain clear boundaries and professionalism while executing research with their peers, but this is clearly possible for people with skills and experience in this regard.  Organizations should not write off the possibility of utilizing peer research assistants because of fear of boundary issues. Our peer research assistant provided an invaluable contribution to the project.

No doubt, I have learned just as much about community-based research as I actually have about the subject of the research itself. From writing a research grant proposal to presenting research in lay language, we have built a great deal of capacity in our organization, gained many skills and strengthened bonds as team members. Our peer research assistant was hired and now works at the agency part-time. I am sitting on a committee to develop another community-based research study under the wing of anther organization. And the project continues to be a learning process, as we move forward with knowledge translation & exchange activities.  

This profile was fiist published on the Universities Without Walls (UWW) website. 

Name: Zack Marshall

Affiliation: PhD at Memorial University Consultant, Griffin Centre, UWW 3.0

Interests: Grassroots, community-based organizing, health care ethics, marginalized communities, sexuality, sexual health, intersectional analyses, critical social science perspectives

Influences: Community activists, people who bridge academic research and community environments

If I wasn't doing all of this... I would be doing similar work outside of the university environment. I would still be doing CBR, community organizing, and raising money.

Somewhere during the 600 kilometers between Toronto and Montréal, Zack Marshall realized that the Friends for Life Bike Rally was a good analogy for the collaborative work he loves to do. He saw teams riding in groups, taking turns expending energy as the leader of the pack and later using the team's momentum while drafting behind the group. This is exactly the approach Zack takes to the community-based research he does as a PhD student at the Memorial University of Newfoundland and through his UWW Field Mentorship Placement (FMP) with Dr. Mark Tyndall at the University of Ottawa.

Zack got his start in the HIV field as a volunteer – "I started out as buddy volunteer with AIDS Community Care Montreal (ACCM) in 1993 with someone in the later stages of AIDS – very isolated, with no family around and just a few friends. He only lived two weeks after I met him but the connection we made had a big impact on me." He later supported the development of support services for HIV-positive women, and got involved with groups focusing on sexual health and reproductive rights. The development of personal connections was something Zack, a gay trans man, was already well acquainted with from his involvement in LGBT communities where community work often takes the form of a very personal kind of activism. He explains that these relationships and grassroots processes are what fuel his ongoing involvement in engaging communities to work towards social change.

Zack has done some pretty amazing things with the communities he works with and lives in. As a member of the Gay/Bi/Queer Trans Men's Working Group, Zack was instrumental in developing Primed: The back pocket guide for trans men and the men who dig us, a project spearheaded by James Murray through the Ontario Ministry of Health and Long-term Care AIDS Bureau. "It's been an amazing project to be a part of and such a highlight to see the impact it's had around the world. It's been translated into 7 languages now." At a recent global health meeting in San Francisco a delegate from South Africa told Zack about the one dog-eared copy, well-used by his community for education and advocacy purposes.

Zack's involvement in a research project about HIV prevention among youth labelled with intellectual disabilities brought him on to a diverse team of community members, researchers, and service providers. The team really fostered intellectual creativity, and ultimately led to Zack's decision to pursue his PhD, nearly a decade after completing his MSW at Wilfred Laurier University. After traveling to St. John's in 2010 to lead a workshop on creating accessible services for LGBT youth that lead to the development of the Coalition for LGBTQ Inclusion, he felt drawn to the island. "When I got accepted into the PhD program at MUN, I knew this is where I needed to be."

Zack credits his early involvement in the HIV field with his introduction to community-based research (CBR). Today, CBR and bridging the gap between research and communities are integral to his work. Through his doctoral studies and his FMP, Zack is addressing ethical issues in HIV CBR. The main project he has been working on in collaboration with Dr. Tyndall involves issues surrounding injection drug use and barriers to health care in Ottawa. While this is the first time he has worked with this aspect of HIV prevention and transmission, Zack says that the knowledge and experience he is gaining is opening up possibilities for the future. He is discovering his strengths in new areas of work, including knowledge translation and exchange, and peer engagement, and looking for ways to integrate these skills into upcoming work. Zack isn't the only person delving into new areas of research as a product of his FMP. As a result of the connections he's made with research teams in Ottawa, he has had the opportunity to initiate an HIV Primary Care and Ethics team including researchers from St. John's and Saint John, and to bring representation on a range of issues to the Atlantic.

Zack's positive experience with his FMP isn't all – he can't say enough about how great his involvement in UWW 3.0 has been. The online delivery format of weekly UWW webinars has allowed him to get involved with people and issues from across the country – an opportunity that doesn't always come all the way to Newfoundland. Through UWW, Zack has connected with both new and familiar faces, learned how the complexities of HIV research are positioned in a variety of different disciplines, and received feedback on writing successful grant applications. He particularly appreciates the support provided by other fellows and mentors involved with the program: "When facing barriers to implementing CBR, UWW reminds us, 'hey, there are a whole bunch of other people who see the value of this approach to research'. It's a form of moral support."

Recently, Zack's experiences in innovative CBR were recognized by a successful funding proposal to CIHR's Operating Grant in HIV/AIDS CBR competition as a co-principal investigator. The project, entitled the Trans MSM Sexual Health study, aims to use qualitative interviewing to collect in-depth information about the sexual health issues, concerns, sexual decision-making processes, and the social context of the lives of TMSM in Ontario and relate this information to HIV prevention and sexual health needs. The project will contribute to our understanding of the extent and scope of social exclusion in this community and the impact on sexual health, HIV risk, and access to HIV prevention services.

What is UWW?

UWW is the educational and training arm of the CIHR Centre for REACH in HIV/AIDS. We provide a national interdisciplinary learning and mentorship program, connecting academics, community members and policy makers to explore HIV research together. The program is funded by a Strategic Training Initiative in Health Research (STIHR) grant from the Canadian Institutes of Health Research (CIHR) and housed at the Ontario HIV Treatment Network (OHTN).

Just over a year ago, our Executive Director (Tom Hammond,) and I were returning home from the OHTN research conference, feeling inspired by the number of exciting and innovative research projects being shared. We started to think aloud about the kind of research we would do in our community if we had the means, and we immediately got talking about barriers to sex among people living with HIV.

We’re doing this study to better understand what these barriers are all about and how we can address them as a community and as an agency. We’re trying to understand what the challenges are – such as fears of transmission or criminalization, stigma, disclosure, changes in body image and sex drive, and so on. We’re also aiming to understand resilience, so from those who are in satisfactory relationships and having the kind of sex they want, we hope to learn about how they overcome challenges or navigate through them. Gaining this kind of data will help us drive future programming or community-based initiatives that can help us respond to some of these issues.

The study is a Community Based Research Project, funded by the Ontario HIV Treatment Network. Because this is a community based research project, this means that the community we are studying is playing an important role in the creation and execution of this study. This includes identifying needs, conducting interviews and analysis, guiding the project, and then learning about, sharing, and benefiting from, the data.  PHAs have contributed to an unbelievable amount of research, but we feel that this study is especially relevant to those participating and the data should yield findings that are actionable at an agency and community level.

We’re conducting qualitative face-to-face, semi-structured interviews, and will be conducting a thematic analysis. Part of the analysis will include a member-checking session where previous participants have the opportunity to review the key-themes that have been identified and elaborate on, add to, or correct, preliminary findings. It’s a way of making sure that the data has been interpreted by the researchers in a way that is congruent with the participants’ interpretations.

I should mention that this study is governed by a Working Group that includes me and Tom Hammond as Principle Investigators, one peer research assistant, another community research assistant, and a consultant. We also have an Advisory Committee that includes representation from Public Health, ACCKWA (the AIDS Committee of Cambridge, Kitchener, Waterloo and Area), the University of Guelph, and ACG’s Board of Directors and client base. We have three PHAs involved in advising and conducting this study.

After our proposal was approved by the University of Toronto Research Ethics board in the fall, it was all systems go. Despite only using passive recruitment methods, people have been signing up quickly to do this study, which is pretty surprising considering we’re asking people to talk about sex.  I’m not sure if it’s because participants feel passionate about the subject matter, feel comfortable with our peer researcher and agency, or simply need money around the holidays (participants are given $40 for their participation) but I’m very happy to say that within just a few weeks we managed schedule nearly 75% of our interview quota.

I look forward to sharing the findings with PositiveLite, com readers. Please let me know if you would like to participate or have any questions about the study. To hear one participant’s experience of being interviewed you can read Wayne Bristow’s account on Show Me the Love and his related musings on love and sex.