Louise flagged that some people might not want others to know about their involvement in research

Transcript

Another thing I learned about research was fascinating was certain racial groups – and this is probably because – maybe because, for sure that we were dealing with a stigmatized disease, but there are a lot of stigmatized diseases now. All mental health is still very stigmatized. Even some people don’t want other people to know they have cancer. There’s lots of things people don’t want people to know they have. 

And what we learned was, for instance, in engaging patients, one of the things that a lot of the researchers wanted to do, in good faith, was to use people like yourself, like people who are actually asking the research questions, from the populations of the people who they were engaging. In some cases that was the right thing to do. Women are happier to talk to women. In general. And you know, Francophones would want to speak in their first – so there are some places in which that was really the right thing.     

But what we learned was, in some cases it was the wrong thing. Because if you come from – for instance let’s say your home country is Rwanda, you’re in Canada, you don’t necessarily want – and it’s a small community. So if you have a Rwandan person asking you the questions, they probably know everybody you know. And they might know your family back in whatever country it is. I’m using Rwanda as an example. It could be anywhere. 

And so we learned that in some cases people actually preferred not to be asked questions by someone that was from their own communities. So it’s really – research – I mean is so complex. The assurance that you’ll get the best research results you can and both obtain participants and retain participants, it’s profound – it’s really profoundly complicated. Much more than I think people realize.

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