Table 2.

Benefits of Participatory Research

Benefits of Participatory Research	Illustrative Quotes
Improved Communication and Sharing of Knowledge Between Stakeholders	I think that one thing I’ve learned from the community members is, no matter what I say, somebody’s going to ask me about their breast cancer. . . . And so I think I’ve learned how to make a better—a broader talk to try to encompass the kind of things people are interested in hearing and to keep them engaged. So I think that’s been very useful. It helps me to try to understand how to convey science approaches. And I think the COTC has worked really hard to make that useful to a broad group of people, and I think that’s been very useful, learning about how you convey science, what to convey and how to speak to community groups.
Enriches Data and Contributes to Knowledge	In our particular site, the COTC was particularly interested in potentially doing geo coding and looking at other environmental factors as a result, and so we incorporated residential and school and daycare history in our [epidemiological] project, which was subsequently adopted by the other two centers. And we probably would not have incorporated that to study, initially, if there hadn’t been a strong feeling about that. . . . That’s a direct benefit from that involvement that we really would have missed.
Strengthens Relationships	The researchers trust community members to be there to support them. I think they have a better understanding of the fact that we [members of the COTC] can understand the work they’re doing.
Increased Sensitivity and Propriety of Research	I think the community members and the COTC members, when they’re hearing about what we’re planning, have always raised questions. You know, “What’s Mother going to think?” Or, “Is this appropriate for a 7-year-old girl?” It’s the same kind of questions a human subjects committee would ask or IRB would ask but, in this case, it’s coming from the community itself, so they’re very legitimate questions and we need to be able to answer them.
Community Becomes More Supportive of Research	I think research, just like doing clinical trials, if you get people to buy into it, you can probably have more people participating and try to work on us finding a cure. . . . The thing is that if you ever get someone to buy into something, then they feel a part of it. It’s a win–win situation.