On his research advisory committee, David aimed to include varying experiences of HIV as well as experiences with research involvement
Transcript
I had never been involved in patient engagement before, so none of us; my supervisor, the other researchers, nobody had ever done… I had done some participatory work before with communities on different topics, but not patient engagement as such, so we really considered the website, read a little bit of articles about patient engagement and we went for what was the kind of more, let’s say, obvious, or the more doable, the viable to have a project. We decided to do a little committee of people living with HIV and consult them, so they would basically be there for researchers. When they would need to consult them, they would ask them questions based on their progress in the study in the project that they were doing.
We wanted a small group, so we started with 10 people living with Human Immunodeficiency Virus (HIV). Thinking back, well we wanted the group to be diverse, we wanted it to be small, but diverse, have different experiences of HIV, different experiences of care. Because the project was able adherence to the treatment and especially difficulties in adherence and taking the treatment, we wanted people who could have different kinds of difficulties. So, we thought 10 people could allow us this kind of diversity in terms of experiences, in terms of difficulties, and it was a small group, but I think in our head we were comparing it with research, because, well then, people in the research study, it’s just small sample. It’s not that small in certain quantitative studies, but still it’s small in most of the studies, but I think for committee, it’s a lot of people.
Listening to the people, how they wanted to participate, etc., we ended up with a group where all those groups represented. We had very different experiences in the group. People were… some people were really involved. There was one person that had just been diagnosed a few months before and was still, I don’t feel really comfortable about talking about my status, but maybe this group is going to help me talk a little bit more and accept the diagnosis, or my new status. So, very different experiences. Some people were really knowledgeable about research, some people were not at all, and we were… that’s what we wanted. That’s what we imagined the committee to be.
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