Globally, over half of all people living with HIV are women. Despite this, relatively little research is focused on the distinct priorities, needs, and experiences of women living with HIV. In fact, across all research there is a gender-based bias against women - for example, in British Columbia (BC), Canada, where approximately one-quarter of people living with HIV are women, only 8% of all open health research grants awarded by federal funding are focused on women’s health.

Here we share our experiences in working in community-based research and women’s health research. Community-based research is research done by, with, and for the communities it impacts. This research method seeks to actively engage community members throughout the research process, valuing their lived and living expertise from inception to sharing knowledge. We hope that in sharing our experiences in research, we can showcase the value of women’s health and community-based research, acting as a catalyst for more people to engage in this type of work.

"It's very sensitive, passionate work to meet women where they are at."

Q. What study do you work on, and what makes it stand out to you?

Shelly: Currently, I am a Community Research Associate with the BC CARMA-CHIWOS Collaboration (BCC3) Study. The study includes 350 women living with HIV and 350 HIV negative women, analyzing the differences and similarities between the two groups to better support healthy aging for women. Community Research Associates are community members who are part of the study team and support the research process. So, I am a woman living with HIV, and I conduct surveys with our participants, support data analysis, and help share results with the community and other researchers. For me, the crucial stand out factor of the BCC3 study is the inclusion of women living with HIV from its inception. This is rare and fundamentally at the core of truly “community” based research. This really both inspires and motivates me to do this work.

Zoe: I am currently a community-based research coordinator with the BCC3 study. My main role is to support the Community Research Associates. This means acting as a resource to them as they undertake study activities and planning training sessions, but also advocating to build the research program in a way that is reflective of the community. I also build relationships with community organizations that work directly with women living with HIV, who are our key partners and stakeholders in creating research driven by community priorities. I echo Shelly - the most special part of BCC3 is how community voices are centred across the study.

Q. What are the things that challenge you the most? What brings you the greatest joys?

Shelly: The main challenge is being able to meet women where they're at.  Everybody is unique and documenting their experiences in a safe, meaningful, good way takes patience, compassion and - above all - listening. Sometimes that can be really challenging as there are many different barriers that exist in women's health research, specifically for those most marginalized within the healthcare system. It's very sensitive, passionate work to meet women where they're at.

Not surprising to me, the biggest joy that comes with that is being able to meet with them where they're at! When I hear the appreciation of women who have faced stigma and discrimination (whether living with HIV or not) be so grateful to have their voices heard, to know their voice matters, it is so affirming of the approach BCC3 is taking towards research. Everyone has a story, and just listening and documenting their experience in both a scientific way and personal way is an incredibly rewarding experience. It can be heartbreaking sometimes, for sure, but it is also incredibly life-affirming for both of us.

Zoe: I would agree - meeting women where they are at is so important, but we face various barriers in doing that. We are constrained within institutions that are not used to working so closely with community members, and so we have to advocate for the inclusion of community members on our study team and flexibility in how women engage with our study. Another challenge is ensuring that we are centering the idea of “doing no harm” continually, really thinking of potential unintended consequences of each decision we make in research.

The biggest joy for me is being a part of a community of like-minded people. Especially with people who I might never have crossed paths with - even you and I, Shelly, we might have never met! Having such a supportive and passionate group to undertake this work with is my favourite part.

"We don't do research for the sake of doing research, we do research that is informed by community priorities and that will tangibly impact their lives."

Q. What do you value most in community-based research?

Shelly: It goes back to the expression, “nothing about us without us.” What I respect about this study and community-based research is that, if it's done in a good way, it engages peers at inception: guiding the questions and providing feedback to the investigators and team that only lived experience can provide. Additionally, this type of research inspires more questions, which will in turn inspire the next generation of researchers, community-based partners, and most importantly, more women involved in research at all levels.

Zoe: For me, also, the community piece is very important, because it ensures that our research is centered on action. We don't do research for the sake of research, we do research that is informed by community priorities and that will tangibly impact their lives. One of the many benefits of doing community-based research is that it is focused on bringing findings back to community and making them accessible.

Shelly: Absolutely! It makes the data accessible to women so they can understand how it impacts their lives and use the information to advocate for their own health care.  

Q. How has HIV research changed you?

Shelly: It has challenged me to participate in ways that I wouldn't have, like attending conferences, doing presentations, and attending support groups (as a participant, but also as a cofacilitator). The most surprising and, selfishly, amazing thing to me though, is how much it has informed my personal health care. I've had the opportunity to be around an incredible group of PhD students across disciplines, doctors, nurses, researchers, and community leaders across the country. Being engaged at that level has changed the way I am able to advocate for myself in healthcare settings.

Zoe: For me, it's made me understand the world in a new and deeper way. It’s made me more thoughtful and critical about how the systems and environments around us impact our lives. And even as someone not living with HIV, being involved in this research has highlighted to me how interconnected we all are - so many of the questions we are asking are broadly applicable to women whether they are living with HIV or not.  I understand health as much more holistic and part of a larger system.

Shelly: “Nothing about us without us” - right? Women’s research is all about this mantra as well, in practice - it applies to all women. To move women’s health research forward, our collective action in advocacy and activism is required.

"This type of research inspires more questions, which will in turn inspire the next generation of researchers, community-based partners, and most importantly, more women involved in research at all levels."

Zoë Osborne is a community-based research coordinator at Simon Fraser University with a focus on sexual and reproductive health and rights, as well as gender equity. She holds a master of public health degree from Simon Fraser University and a bachelor’s degree in molecular and cellular biology from Harvard University. She works to practice ongoing allyship with women living with HIV.

Shelly: Shelly is a Community Research Associate with the BCC3 Study, a very proud mother and grandmother, avid gardener, biker, and a vocal advocate for women’s health research. Shelly continues to teach and choreograph dance for women living with chronic health conditions; for mobility, joy and artistic expression.