Two Aspects of Community Involvement Posted on November 30, 2007 Charles L. Bowden (bio) talks about efforts to involve the community in the research process.

The funding mechanism for these centers really requires, and I think rightly so, a participation in the community, and there are really two different aspects to that. They interrelate, but they're fundamentally different. One is the community in the same way that the community is involved here in the ISBD. Namely, family members, advocates for the mentally ill, members of DBSA, the Depression and Bipolar Support Alliance, have been featured in this meeting, Sue Bergeson, others such as this.

To have the equivalent of those kinds of national leaders at the regional level involved in advising you; it's an interaction. It's not a one-way, consumer-to-the-expert or expert-to-the-consumer, but it's an active dialogue in participation.

So they're on advisory committees. They're made familiar with the research. They have some inputs, they would not, in most instances, be scientifically trained, although they would not be excluded from having scientific training, but they still have roles in terms of what, from the consumer or family perspective, they would value in terms of information or new research.

But the other major part of that is moving research, and this is a part of the National Institutes of Health so-called roadmap, moving research away from just the ivory tower location into the community, where for example, a high proportion of bipolar and, even more so, schizophrenically disordered, patients receive care is in public sector settings, not only because they don't have regular insurance in the sort of slapdash U.S. fashion, but because they're functionally disabled.

So they're unemployed. They may be, in the case of a substantial number of schizophrenics, in some kind of foster care home setting or structured home living, so they're not fully independent.

To expect those people to drive 45 minutes on freeways, they may not drive, not just because of their illness, but because they don't have a car, they don't have a driver's license. So rather than expect the individual to come to the center, we expect the center to go out and function in the community-based setting.

I'm taking a bit more time to describe this, in part, because it's very complex. If this were easy to do, then we would have a broader spectrum ethnically and socioeconomically in the studies we conduct. In fact, studies tend to under-represent minorities, under- represent women, child-bearing women, under- represent persons whose English is limited, things like that.

So all of those require extra efforts, really extra efforts, but if we really care about the full spectrum of these patients, and often the most-severely-ill spectrum of these patients, they have to be in these studies, whether they're studies of a new treatment or studies of adherence to the treatment plan, whatever.

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