Ethical Issues of Psychiatric Consumer Advisory Boards

TO THE EDITOR: As a patient with schizophrenia, I have served as a member of several consumer advisory boards (CABs). Unfortunately, there are a variety of ethical problems surrounding them. Although a CAB is not required by most major funding sources, most of these boards seem to be formed as a condition for disbursing grants to researchers. One of the major problems with this model is that researchers, who are experts in their narrow field, are recruiting essentially laypeople to advise them on research that is usually well beyond a layperson’s education. Furthermore, CABs seem to be simply placating the consumers, which is ethically wrong. Researchers “listen” to the consumers by recruiting them for the CAB and having discussions several times throughout a study but seem not to value their input. However, the researchers provide encouragement anyway despite members not seeing their advice put into practice. Members who voice concern about not being heard find these boards extremely frustrating. Also, in my most recent situation, we were paid only $35 to drive, park downtown, and contribute 2 hours of our time. Essentially, this money paid for parking and gas. Thus, the board members are not only wasting their time because they are not heard, but they are often not even compensated well. It is unfortunate that universities with such large endowments pay consumers—many of whom endure daily mental torment—nothing for their time and basically do not listen to them. In the end, it seems CABs are needed by the researchers but not wanted, and it seems, at least to this CAB member, that we are viewed as a burden to the research process.