Research with and for communities

When Valerie Nicholson first got hired as a peer research associate with the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), she had some major concerns. And she wasn’t shy about expressing them.

“When we started out, women living with HIV were not involved in research decision-making,” says Nicholson. “Sure, they were asked lots of questions, but they weren’t part of developing them. I was shocked at how disrespectful some of the language was, for example, questions like ‘How often do you abuse drugs?’ or terms such as ‘mother-to-child-transmission’.

“But my biggest concern was what researchers were going to do with this information. People would often conduct surveys on Vancouver’s downtown east side and we’d call them ‘drive-bys’ because we’d never see them again.

“With CHIWOS, we had this opportunity to say that we’re gifting you our voice, so what are you going to do with this information? What are you going to do for this community? And I think this is what really created the foundation for the success of the CHIWOS study.”

CHIWOS is a longitudinal, multidisciplinary study that aims to improve the lives and care of women living with HIV in Canada. It is funded by the Canadian Institutes of Health Research (CIHR), the Ontario HIV Treatment Network (OHTN) and the CIHR Canadian HIV Trials Network. A key component of CHIWOS was a national survey of thousands of women living with HIV, conducted three times, 18 months apart.

Angela Kaida is associate professor in the faculty of health sciences at Simon Fraser University. She holds the Canada Research Chair in Global Perspectives in HIV and Sexual and Reproductive Health, and is one of the co-Principal Investigators and the British Columbia lead of the CHIWOS study. She is deeply committed to what she calls the “co-production of research by the communities we serve.”

“Many people think of HIV as a disease of men, but in Canada about a quarter of all those living with HIV are women. And that proportion has increased fairly steadily over the last 20+ years. What hasn’t increased is the level of research focus on the priorities of women living with HIV. There is a whole realm of distinct health concerns they face, such as interactions with contraception, or what might happen when they get pregnant or go through menopause.

“With the CHIWOS study, we wanted to ensure that women like Valerie, who were living with HIV, were part of the research process  — from defining objectives, leading recruitment, administering survey tools and interpreting data with us. So we hired, trained and supported a diverse team of 45 peer research associates, including young moms, rural women, and Black and Indigenous women.”

Today, Nicholson is part of the national CHIWOS management team, responsible for representing the voices, needs and perspectives of the study’s peer research associates and other women living with HIV.

An Elder of Mi’kmaq, Haida, Gypsy and English descent, Nicholson is also a Peer Indigenous Research Associate with the British Columbia Centre for Excellence in HIV/AIDS. She has presented at Canadian Association of HIV Research (CAHR) and International AIDS conferences. In 2018 Nicholson received the CAHR Red Ribbon Researchers Award and in 2019 the CANFAR Excellence in Research Award.

Nicholson has also co-authored approximately 50 research papers, including articles about how to train peer research associates and operationalize community-based research in a major longitudinal study like CHIWOS.

Nicholson and Kaida are part of a growing movement in research that is conducted with and for — not on — members of a community. In Canada, this research approach is especially valuable in Indigenous communities, who have a long history of being subjected to extractive research practices over which they had little or no control.

With community-based research, the communities in which the research is taking place are full partners, providing input on survey questions, data collection methods and knowledge dissemination strategies. While community-based research can make important contributions to knowledge, its ultimate goal is to promote positive social change in the community.

Just last month, the federal government announced an investment of $19.2 million to support 46 community-based and community-led research partnerships through the Race, Gender and Diversity Initiative.

The initiative was led by the Social Sciences and Humanities Research Council (SSHRC), in partnership with CIHR, whose investment helped fund projects that have a focus on health. For years, CIHR has provided funding specifically for community-based research, including for HIV and sexually transmitted and blood-borne infections (STBBI).

Among the projects funded through the new Initiative is a partnership between Inuit organizations and McGill University to increase capacity for Inuit-led perinatal health services, and improve overall maternal and child healthcare in Inuit Nunangat.

Another is Mitho Miskawawin: Moving well together to enhance Indigenous girls' sport and physical activity opportunities. The team is made up of scholars from the University of Saskatchewan and the University of Alberta working in partnership with the Montreal Lake Cree Nation Community, as well as two Nehiyaw Elders.

Then there’s Laurentian University’s Maamwizing: A hub for Indigenous community driven research, which aims to build partnerships to better align research with community needs. The project is a collaboration with the Northern School of Medicine, and Indigenous partners White Buffalo Healing Lodge and Akinomooshin Inc.

According to Ted Hewitt, President of SSHRC, “This new Race, Gender and Diversity Initiative will generate fresh perspectives and insights based on the lived experiences of underrepresented and disadvantaged groups — vital to building a future that is more diverse, sustainable, democratic and just.”

Still, a community-based approach to research has its challenges. There are institutional structures and barriers, such as less-than-nimble finance departments, which can impede fair compensation for those who contribute their expertise and time. Ethics committees may also be unfamiliar with some of the principles of community-based research. Nicholson still can’t hold certain positions because she doesn’t have a university degree.

For Kaida, “This work required a real ‘un-learning’ of some of the research approaches I was familiar with. I was trained in research objectivity and conducting research for research’s sake — but there was no way that was going to happen [with the CHIWOS study]. Women said to me ‘If you’re here to watch our early demise, our onset of ill health, and just report on that, nobody needs you to be here.’”

Nicholson agrees. “It wasn’t a smooth road. We had to build that trust. I’m pretty sure I kicked and screamed and had some words to say. And this was a big study – we had people from different provinces that had to work together to come up with this concise and respectful survey.”

Many now see CHIWOS as a gold standard for community-based research, especially in terms of how they train and support their peer research associates. The study is also a model for circular learning — sharing and giving data back to the community.

For example, after completing the baseline survey, the peer research associates suggested sharing preliminary results with participants, so a simple infographic was created to show them. The peer research associates also asked participants for their feedback on the study, which in many cases was implemented.

According to Kaida, “I think those efforts really helped us sustain a very high retention rate in the study over time, despite this being a very marginalized and vulnerable community.”

At the end of the study, CHIWOS Indigenous data was given back to Indigenous leadership in a series of ceremonies, most recently at a water ceremony outside of Montreal.

“We have to remember that when we do research, we’re actually getting a gift from those who trust us and open up to us,” says Nicholson. “Today, I can stand strong and say, yes, we’re making a difference, your voice matters and I thank you for that gift.”

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