---------- Forwarded message ----------
Date: Wed, 18 Nov 1998 10:02:27 -0500

Subject: NAMI E-News    Federal Policy Update

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NAMI E-News        November 18, 1998          Vol. 99-50
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NIMH Wants YOU!

CONSUMERS AND FAMILY MEMBERS NEEDED TO HELP
DECIDE WHAT RESEARCH TO FUND

NAMI members have an important and unprecedented opportunity to help
shape the research priorities of the NIMH.  As called for by a recent
NIMH report, the leading government funder of severe mental illness
research is seeking consumers and family members to serve as grant
reviewers.  NIMHs goal is to "enhance the clinical and public health
relevance of a crucial component of [their] scientific portfolio."  

What are the specifics?  

Consumers and family members as well as providers and policy makers
will be included on review groups, designated "public members."  Only
scientific experts participated in these study groups before, in the
first and extremely important stage of deciding what research NIMH
funds.

Consumer and family members will only be included in review groups
considering clinical and services researchthat is research aimed
explicitly at understanding or developing treatments or services for
people with mental disorders.

Public members of review groups will be asked specifically to consider
the following questions:  Does the research address issues of public
health significance?  Does the plan for enrolling and interacting with
subjects make sense?  Will subjects be treated ethically?  Consumers and
family members will get a vote on each application discussed.

Responsibilities will be fairly time-consuming.  Review group meetings
are held in Washington, DC, usually for two full days and can occur as
many as three times a year.  While travel costs are covered along with a
$150 honorarium/day of the meeting, time spent reading and providing
written evaluation on 15 to 20 grant applications will not be
reimbursed.  

Even though being a grant reviewer requires hard work, it is a
critically important opportunity for NAMI consumer and family members to
weigh in on NIMHs research portfolio in a way never before possible.
Individuals who are interested should submit a resume to:  

Ms. Betty Nkansah
Public Participant Nominees
NIMH
5600 Fishers Lane, Room 9-105
Rockville, MD  20854
FAX:  301-443-4720

The resumes should be postmarked by January 15, 1999.  NIMH has proposed
the following format for the resumes:

NAME:

ADDRESS:

PHONE NUMBERS (office, home, fax, and e-mail):

Experience Involving Mental Disorders (e.g., personal, family, service
provider, educational, or policy-maker):

Mental Health Public Service  (e.g., on Board of Directors, volunteer
work, organizations, etc.):

Work Experience:  (especially that relates to dealing with mental
illness):

Current Employment:  (If applicable):

Education:  

NIMHs announcement makes a point of saying that "these materials will
be treated confidentially by NIMH staff; nonetheless, there is no need
for persons to disclose any information about their experience with
illness that they feel is too personal."  

NIMH also provides some insights in their announcement as to how they
will select "public members."  The selection criteria include:  

Are you knowledgeable about mental health research studies and/or have
you participated in such a research study?

Do you have personal experience with a mental disorder, either as a
consumer or as family member or care-giver, or through
training/experience as a provider, educator, or policy maker?

Have you been involved in community service, specifically involving
the interests and perspectives of persons with mental disorders?  For
example, have you served on boards, committees, given talks, published,
or otherwise provided community service.

NIMH notes that a nominee does not need to qualify under all of these
criteriaexperience in one area may outweigh a lack of experience in
other areas.  Ten to 15 "public members" are likely to be selected by
NIMH over the next 12 months.  The NIMH announcement can be located
online at http://www.***.com/
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