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NIMH and the National Advisory Mental Health Council Stand Up for Consumer Participation and Increased Protections in Research

Chris Marshall 703-524-7600
For Immediate Release
10 Feb 99

On Friday, February 5th, the National Advisory Mental Health Council (NAMHC) approved two measures that will improve research protections for consumer volunteers and increase consumer participation in research review. The Council also approved a strategic planning process at the NIMH, which would include consumer and family input in priority setting for the institute. All of these steps will help strengthen the research enterprise, improve the public trust in psychiatric research, and make partnership between NAMI members and researchers even stronger, all the while improving the protections afforded all those who nobly volunteer to be research subjects.

On the ethics front, the NAMHC unanimously approved a recommendation by Dr. Steven Hyman, director of NIMH, to create a working subgroup of the council to evaluate research proposals that may especially put consumers at risk of distress or increased symptoms in symptom provocation (challenge) studies and studies involving the discontinuation of medication. Additional members will be added to this working group—a bioethicist and consumers and family members—which will provide an additional level of review of such research proposals. This group will make sure that the research asks an important scientific question that cannot be answered any other way. Also, the group will consider how to minimize distressful elements of the research design. The group will make sure that the highest protections of the research volunteers are in place. If the research fails to meet these criteria it will face not being funded.

Later in the day, the council took up the topic of involving members of the public in certain study sections at NIMH. The council had previously approved a recommendation to include members of the public, including consumers and family members, in peer review groups handling health services research grants. Peer review is a critical hurdle for research funding at NIH and, as its name suggests, involves a group of scientific peers in considering the merits of grants. Council, in its previous recommendation, acknowledged that there is an enormous divide between what kind of health services research is conducted and the results of that research, on the one hand, and the real world practices, experiences, and needs of consumers, their families, providers, and policy-makers, on the other hand. One effort to bridge that gap involves having members of the public added to study sections, to consider the relevance of research grants, in terms of the real world needs and concerns of people with mental illnesses, the feasibility of data collection (for example, subject recruitment) based on real world experience, and the ethical treatment of subjects. Public members would bring unique expertise in these areas to bear on consideration of grants in the peer review groups. It should be noted that such involvement has been going on for years in other NIH institutes focused on AIDS and cancer, for example, with very positive results.

The reason this issue was brought forward to the Council again is that some scientists, most visibly at this meeting a representative of the American Psychological Association, objected to the inclusion of consumers and family members on peer review groups. In the APA’s presentation, peer review was heralded as the reason American science has been so strong, and that to dilute it in this way would diminish its functioning. The APA further stated that consumers with a mental illness and their family members would not be able to conduct themselves in a mature, professional manner in these meetings, but would rather press forward as advocates of a single position or point of view, mindless of the technical issues and general issues of concern in mental illness treatment and service. The APA also asserted that the appropriate role for consumers and family members was largely in cheerleading for funding with the Congress.

Representatives from NAMI and the National Depressive and Manic Depressive Association (NDMDA) expressed support of the NIMH recommendation, and also took issue with some of the comments put forward by the APA, stating that it was insulting to suggest that just because someone has a mental illness or is the family member of someone with a mental illness that he/she cannot behave in a professional meeting; or that consumer and family members want anything but the best science; or that we have nothing to offer to improve the science; or that the only role of a consumer/family member is in fund-raising.

After these presentations the Council unanimously reaffirmed its support of moving forward with its recommendation that members of the public be included in some peer review groups.

At the end of the day, NIMH and the NAMHC deserve praise from consumers and family members for their leadership in research and research ethics. We look forward to a strengthened partnership with research by virtue of these measures, thereby achieving our common goals together.

See NIMH’s website for more details at and scroll down to Ethics in Research on Mental Illness.