HIV Pre-Exposure Prophylaxis and Sex Work in Canada 2016

as Saskatchewan, where the agricultural movement, and the poverty that was taking place
in the country, led to a cooperative movement. Basically, doing research on, and with, the
community, to mobilize community to be able to respond to the issues.
It was very early in this stage that I coined the term in the HIV and AIDS field as
“community-based HIV research.” I’m very proud to have done that because no one
ever thought of involving community. Research was all so biomedical. We had this young
student who was looking for a bit of extra cash, and his name was Dan Allman. So “Dan,”
I said, “we’ve got to document this, and we’ve got to develop a document.” So Dan
actually sat down and wrote a very comprehensive document about community-based HIV
research. And in that he demonstrated that it can mean many things, and many different
things to different people. But, primarily, community-based HIV research is focused on
action and mobilization and participation in various forms.
Interestingly enough, community-based HIV research has moved beyond that. There was
always a distinction between what is research, and what is community participation and
community development. The two go very closely together, but in different combinations.
Now, we have individuals in this country who think, “well this is community-based research,
so this is what is required.” But I think it’s important to understand the organic nature of
how this happened.
Some of you may remember people like Kevin Orr, who was extremely involved in activism
and mobilizing it. Kevin had a very good mind. He knew what questions to ask, and that
helped me as a researcher to work and to help him with the research skills that I had to
move things forward. What we did in Toronto led to how things were done elsewhere
in Canada and across the country. I did a number of other studies that were national in
scope. Then, we have seen different models of organizations doing their own research, and
bringing in researchers. So, I think that rather than co-opting individuals to this sort of
thing, it is important to have this organic nature, and I think in that spirit Dan and Andrew
have brought together this group.
You may not know it, but part of it is we’re here—Dan and Andrew are here—to get your
knowledge and wisdom and the questions that you bring. Also, there’s some expectation
that you have skills to take and use the knowledge that might come out of research to
move things forward. And I think it’s an expectation that if there is any research done at
any point in time, people will use it. There is always the need to implement and use the
knowledge. In my experience, much of the research that I have done has been used by
organizations when they’re putting in proposals. Proposals for programs which support
the need, or address lack of knowledge, or proposals for some other research project that
they might want to do on a smaller basis in their own community.
So that document that Dan wrote [Concepts, Definitions and Models
for Community-Based HIV Prevention Research in Canada] shows how
relationships within community-based research can be very, very
varied. There are always issues. Some of the issues vary with the
size and scope of a project. Like a national study—it’s very,
very difficult to come up with one definitive answer in terms of
what should be done because there are regional differences.
There are differences in terms of the populations that are
affected. There are differences in the way services are
delivered. To come up with a single conclusion as to what
might happen can be very problematic. Sometimes it’s good to
keep things small and contained, but sometimes you want to have it large to
see how things evolve in different ways; how one community can do something one way,
and another can do something another way. And working in synchronicity, the ultimate
goal or outcome might happen.
I think it’s also important—you’ve heard Andrew talk about this today—the importance
of building trust between researchers and between community, and to recognize that the
skills of the community and the researcher might be quite different. And the skills of all
individuals in this room with regards to community-based research might be also very,
very different. So individual roles in research can vary immensely. I think that’s all I really
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