Patients and Families and DSM Revision Process

In Reply: We appreciate the willingness of Dr. Spitzer and Dr. Balon to share their thoughts about our article. We were surprised by the passionate responses, because we feared that our article was too tentative. The arguments for and against the idea of patient and family involvement in the DSM revision process are substantive, and our ambivalence is genuine.

Although it is clear that Drs. Spitzer and Balon do not favor patient and family involvement, we are puzzled by their rationales. For instance, Dr. Spitzer notes that consumer and family organizations are already included—they review drafts and communicate concerns to various DSM development committees and therefore "have input." Use of this point as a reason for not involving patients and families seems to contradict Dr. Spitzer's opposition to such involvement. If patient and family involvement is wrongheaded, then why are we doing it? Perhaps Dr. Spitzer expresses a minority opinion.

Dr. Spitzer also notes that our article does not address the question of why the current level of involvement is not sufficient. The response is simple. We don't know whether the current level is sufficient. This question is worthy of discussion. From our reading of the literature on the DSM revision process, we find it difficult to assess the impact of "outsider input" on procedures and outcomes.

Dr. Spitzer is especially concerned about our suggestion that patients and families may have critical viewpoints about the phrasing of diagnostic criteria and the descriptions of mental disorders. He feels that the airing of such concerns by patients and families would be "insulting" to DSM contributors. We certainly don't want to insult anyone, including our colleagues, friends, and respected leaders like Dr. Spitzer. We find his reaction puzzling on two counts. First, he seems to assume that patient and family involvement is connected to insensitivity on the part of DSM contributors, which certainly is not our view. When the DSM-IV mood disorders work group made suggestions to the DSM-IV task force, should the work group have been accused of insensitivity to the task force and of implying that the task force members needed to be educated about mood disorders? Second, Dr. Spitzer's haste to take offense at our considerations underlines how very sensitive the issues of stigma and negative evaluation are. Rather than brushing these issues aside, might a more thorough consideration of them be warranted?

Dr. Spitzer's point that DSM committee members are chosen because they are experts is true. We regret omitting this documented fact. However, expertise is a necessary but not a sufficient condition for inclusion. Not all credible diagnostic experts are appointed to the committees, and therefore other criteria must be used to select members. We challenge Dr. Spitzer to deny that the factors we identified—other than expertise—are relevant, and indeed unavoidable, in determining "expertise."

Most of the concerns raised by Dr. Balon were addressed in our article. In addition, he points out that we seem to imply that psychiatry is somehow different from the rest of medicine. He has pegged us dead on. Although we are entirely comfortable with psychiatric medicine, psychiatry is indeed different. Psychiatry's distinction emerges from what mental illness does to the personhood of the patient (1). Patients and families are the obvious experts in the experience of mental illnesses. Accordingly, the process of refining psychiatric diagnoses should take this unique perspective into account.