Public participants who have had experience with mental disorders will be included for time this year in scientific review groups at the National Institute of Mental Health (NIMH), which, prompted by a recent report from the National Advisory Mental Health Council (NAMHC), is seeking to broaden the range of perspectives brought to the review of grant applications for treatment and services research.
Under this new system, public participants–people who have experience with mental disorders either personally or as a family member, service provider, policy maker, or educator– would be included in the initial review undertaken by scientific review groups. The second-level review, conducted by NAMHC would remain unchanged. According the NIMH, NAMHC aggreed that the review process will benefit from the perspectives pf public participants regarding the public health relevance of an application and patient/consumer considerations that may influence study design, feasibility of recruitment and retention plans, or consent procedures.
The change comes out of “Bridging Science and Service,” the recent report developed by NAMHC’s Clinical Treatment and Services Research Workgroup last year. The report advised strategies for increasing the relevance, speeding the development, and facilitating the utilization of research-based treatment and service interventions into both routine clinical practice and policies guiding local and national mental health service systems.
“In the competition for research funding common to all medical science, what constitutes expert review?” asked the group in the report. “In rapidly developing fields such as treatment and service systems research, generic challenges are exacerbated by special issues: how to ensure the availability of appropriate and sufficient review expertise from within a relatively small pool of experts and, given demands from all sectors of a field for the participation of those experts in multiple research activities, how to apply and adhere to Federal conflict-of-interest policies and procedures.”
The workgroup added that review committees for science seeking to affect care may need the expertise of individuals with a clear understanding of the true public health need and the personal impact of mental illnesses. This recommendation is also in line with last year’s Institute of Medicine report that encouraged increased involvement of the public in research priority setting at the National Institutes of Health (NIH).
Duties of the public reviewer include reading and providing written evaluations of 15-20 grant applications per meeting and commenting on strengths and weaknesses of the application’s public health significance and/or innovation; the feasibility plans for recruitment, retention and follow-up of subjects; outreach efforts to special populations; and on protection of human subjects.
- knowledge about mental health research studies and/or personal experience as a participant in mental health research studies;
- personal experience with mental disorders either as a person with a mental disorder or as a supporter of such a person (e.g., spouse, partner, parent, sibling, grandparent, or caregiver) or knowledge of mental disorders through other experiences or training (e.g, practitioner, educator, mental health policy maker);
- community service, particularly involving representation of the interests and perspectives of persons with mental disorders; ability to identify issues that are important to persons with mental disorders; and major interest on the policies/therapies that affect patients (e.g., service on boards, committee memberships, community service, publications, or talks).
Similar policies have been put into place at other NIH institutes including the National Cancer Institute for some breast cancer trials, and the National Institute of Allergy and Infections Diseases for some AIDS trials.
“I understand those panels have worked well, for example, at developing AIDS protocols that have increased compliance associated with them as a result of giving the AIDS community direct input on an application instead of using a more theoretically driven approach of the proposed investigator without this relevant peer review feedback,” said APS Executive Director Alan G. Kraut. “I also see an appropriate public role, particularly in the more applied side, that would be particularly supportive of more behavioral approaches to mental health treatment. I think our treatment/health services research is much more intuitively understandable to the intelligent lay person. When that person is asking ‘so what,’ it is our research applications that will be able to provide the answers more easily, with models such as rehabilitation, cognitive-behavioral therapy, etc. I see this as a way to increase our support in the consumer/family member community.”