On David's project, patients and researchers were motivated to know more and the partnership emerged
Transcript
I think I was like, asking for change. At the same time, I think when opportunity showed… when there were opportunities, I made sure that these individual members, these individual patients, could meet some researchers, so they could talk for themselves, make a room for themselves, and I think slowly this idea of we give information and we receive another kind of information and this is improving our project, but the project never changed, slowly, in the head of the researchers, this changed.
It was, we need to create more partnerships, but it happened… I don’t know how it happened. It’s really difficult for me to say what exactly… I think it’s a whole social process and it’s like, research is also a social and cultural phenomenon and I’m still working on this, but I think it’s totally an outcome of working with our little group of patients. They radiated something beyond their little discussions and it’s just not the content of the discussion, it’s the medium.
The way the discussions were organized and everything, it caught people’s interest and they wanted to know more. They wanted to know more about what patient’s think, so they changed the way they do research to include more perspective of patients and be more interested in that. They were willing to collaborate as well, so when there were some individual members that could be grabbed and brought into the research team as collaborators and as partners, they were also willing to do that.
So, there was definitely this open mindedness on the part of researchers that made a big difference. Not only within our little research team, I think in the broader institution, in the circle where we work, a kind of a… researchers from the service for people living with HIV, they were willing to do that and they were ready to do that.
I think there was some also… some already started collaborating with community organizations. There was already a culture established around that, but patient engagement gave them new tools to work more directly with different people, different stakeholders. So they enjoyed that.
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