To the Editor: Traditional research, by placing researchers apart from and above research subjects, does not readily promote genuine collaboration between researchers and study participants (1). Recently, the National Institute of Mental Health (NIMH) asserted that "establishing a research agenda that is responsive to the needs and priorities of key stakeholders is likely to increase the usefulness of research results" (2). Moreover, it is critical that such consumer input reflect the views of indigent and minority persons who constitute disproportionately large subgroups of the nation's seriously mentally ill population, especially those with schizophrenia (3).
Surprisingly, a PsycINFO search revealed no studies of the research priorities of users of psychiatric clinics during the past decade. To gain a better understanding of the priorities of this group, we conducted an exploratory study with patients of a psychiatric clinic in Brooklyn in November and December 1998. All cognitively intact patients were asked to complete an anonymous questionnaire in which they identified the five most important and five least important items from a list of 15 randomly distributed topics for psychiatric research. Respondents could add items, but rarely did so.
Over two months, 140 persons, representing 40 percent of eligible patients, completed the survey. The mean±SD age of the respondents was 46±14 years. Sixty-four percent were African Americans, of whom 28 percent were Afro-Caribbean; 19 percent were Caucasian, 14 percent were Latino, and 3 percent were from other ethnic groups. Fifty-eight percent had been in treatment five or more years. Their demographics resembled those of the entire clinic; the details have been reported previously (4).
Because the questionnaire was completed anonymously, we could not determine the respondents' diagnoses. However, excluding dementia patients, the diagnostic distribution of patients at the clinic was schizophrenia, 31 percent; affective disorder, 36 percent; anxiety disorder, 22 percent; and other diagnoses, 12 percent.
Six items were ranked as most important by 40 percent or more of the respondents. These items called for more research on brain chemicals that cause mental illness (61 percent), how society affects mental illness (46 percent), drugs to treat mental illness (44 percent), family therapy as a treatment for mental illness (41 percent), the effects of poverty on mental illness (41 percent), and the use of vocational training and rehabilitation for mentally ill persons (40 percent). A principal components factor analysis with varimax rotation indicated that the 15 items that were being rated for importance could be divided into four broad categories: the effects of society, poverty, and racial discrimination; the effects of brain chemicals, genetics, and drugs; the effects of family therapy and the family; and the effects of other variables.
The least important items were more evenly distributed, with only one item, the effects of sexism or gender discrimination on mental illness, considered least important by 40 percent or more of the respondents. Other items ranked as least important were effects of racial or ethnic discrimination on mental illness (39 percent), effects of neighborhood on mental illness (26 percent), effects of poverty and income on mental illness (25 percent), and psychotherapy for mental illness (24 percent).
This survey of one segment of the consumer population should be at least partly reassuring to the designers of the national psychiatric research agenda because the most commonly endorsed cluster of important items concerned research on brain chemicals and drugs to treat mental illness. Both of these items have been priorities of NIMH and the National Alliance for the Mentally Ill (NAMI) (2,5). However, a second cluster of responses that focused on the social etiology of mental illness, such as the effects of poverty and society, has had substantially lower priority for NIMH and NAMI. Presumably, these consumers' everyday experiences have made them keenly interested in the role social forces play in influencing psychiatric well-being. This finding suggests that greater priority should be given to understanding patients' social context and their experiential knowledge.
Dr. Cohen is professor and director of geriatric psychiatry at the State University of New York Health Science Center at Brooklyn.