**NATIONAL INSTITUTES OF HEALTH**

**DIRECTOR'S COUNCIL OF PUBLIC REPRESENTATIVES (COPR)**

**MEETING MINUTES**

October 26, 2007

**NATIONAL INSTITUTES OF HEALTH (NIH)**

**OFFICE OF THE DIRECTOR**

**DIRECTOR'S COUNCIL OF PUBLIC REPRESENTATIVES (COPR)**

**Fall 2007 Meeting**

**Building 31, C-Wing, Conference Room 6, NIH Campus**

**Bethesda, Maryland**

**October 26, 2007**

***NIH Participants***

Raynard S. Kington, M.D., Ph.D., Deputy Director, NIH

John T. Burklow, Director for Communications and Public Liaison, Office
of the

> Director, NIH

Kelli L. Carrington, M.A., Executive Secretary, COPR, and Public Liaison
Officer*,* Office of Communications and Public

> Liaison, Office of the Director, NIH

***COPR Members Attending***

Syed M. Ahmed, M.D., Dr. P.H., M.P.H.

Craig T. Beam

Christina L. Clark, M.A., M.B.A.

Naomi Cottoms, M.S.

Linda Crew, M.B.A., R.N.

Valda Boyd Ford, M.P.H., M.S., R.N.

Elmer R. Freeman, M.S.W.

Elizabeth Furlong, R.N., Ph.D., J.D.

Brent M. Jaquet

Nicole Johnson, M.A., M.P.H.

Nicolas Linares-Orama, Ph.D.

Cynthia A. Lindquist, Ph.D., M.P.A.

Matthew Margo, LL.M.

Marjorie K. Mau, M.D., M.S.

Anne Muñoz-Furlong

Ann-Gel S. Palermo, M.P.H.

James H. Wendorf, M.A.

***COPR Members Not Present***

Wendy Chaite, Esq.

Michael Manganiello, M.P.A.

***ACD Liaison***

Annelise E. Barron, Ph.D.

***Speakers***

Barbara Alving, M.D., Director, National Center for Research Resources,
NIH

Jeremy M. Berg, Ph.D., Director, National Institute of General Medical
Sciences, NIH

Patricia A. Grady, Ph.D., Director, National Institute of Nursing
Research, NIH

Alan I. Leshner, Ph.D., Chief Executive Officer, American Association
for the Advancement of Science

Yvonne T. Maddox, Ph.D., Deputy Director, National Institute of Child
Health and Human Development, NIH

Lawrence A. Tabak, D.D.S., Ph.D., Director, National Institute of Dental
and Craniofacial Research, NIH

**CONTENTS**

Executive Summary

Welcome and Introductions

Raynard S. Kington, M.D., Ph.D.

NIH Director's Update

Raynard S. Kington, M.D., Ph.D.

NIH Public Trust Initiative: COPR Update

Patricia A. Grady, Ph.D., and Yvonne T. Maddox, Ph.D.

NIH Pioneer and New Innovator Awards

Jeremy M. Berg, Ph.D.

NCRR Community Engagement Activities

Barbara Alving, M.D.

From Public Understanding to Public Engagement

Alan I. Leshner, Ph.D.

NIH Peer Review

Lawrence A. Tabak, D.D.S, Ph.D.

COPR Work Group Day: An Overview

Christina L. Clark, M.A., M.B.A., and James H. Wendorf, M.A.

Update: Work Group on the Role of the Public in Research

Syed M. Ahmed, M.D., Dr. P.H., M.P.H., and Ann-Gel S. Palermo, M.P.H.

Update: Communications Work Group

Anne Muñoz-Furlong and Brent M. Jaquet

Public Comment

ACD Liaison Report

Annelise E. Barron, Ph.D.

NIH Director and COPR Member Summary and Next Steps

Adjournment

**EXECUTIVE SUMMARY**

The meeting of the National Institutes of Health (NIH) Director's
Council of Public Representatives (COPR) was held on October 26, 2007.
Elias A. Zerhouni, M.D., NIH Director, could not attend the meeting
because of unexpected family commitments. Raynard S. Kington, M.D.,
Ph.D., NIH Deputy Director, welcomed the COPR members and presenters; in
addition, he recognized Ms. Kelli L. Carrington as the new Executive
Secretary for the COPR. Dr. Kington thanked Christina L. Clark, M.A.,
M.B.A., and James H. Wendorf, M.A., COPR's Meeting Agenda Work Group
Cochairs, for their extensive support of both the Council and the NIH
staff during the Council's recent transition period.

Dr. Kington recognized and thanked the four retiring COPR members: Wendy
Chaite, Esq.; Craig T. Beam; Michael Manganiello, M.P.A.; and Nicolas
Linares-Orama, Ph.D., M.P.A. Dr. Kington gave a special thanks to COPR
member Marjorie K. Mau, M.D., M.S., for agreeing to participate in the
Director's Advisory Council's Working Group on Peer Review and on the
newly established NIH Council of Councils.

Dr. Kington thanked Matthew Margo, LL.M., for helping NIH produce a
30-minute interview with Dr. Zerhouni and CBS reporter Charles Osgood
for the CBS Cares radio program. He also noted that Annelise E. Barron,
Ph.D., liaison to COPR from the Director's Advisory Council (ACD), would
be retiring in December and thanked her for working so well with Wendy
Chaite, COPR liaison to ACD, to enhance communications between the two
committees.

Dr. Kington provided updates in a number of areas.

First, he reported that in September 2007, NIH launched the New
Innovator Award with 30 recipients; these awards reinforce the notion
that novel ideas and new investigators are essential ingredients for
scientific progress.

Also in September, 12 new Pioneer Award recipients were announced; these
awards support scientists at any career stage.

Anthony S. Fauci, M.D., Director of the National Institute of Allergy
and Infectious Diseases, received three distinguished honors this year:
National Medal of Science, Lasker Prize, and George M. Kober Medal.

Nobel prizes were awarded to two longtime NIH grantees, Mario R.
Capecchi, Ph.D., of the University of Utah School of Medicine, and
Oliver Smithies, Ph.D., of the University of North Carolina at Chapel
Hill.

The National Institute on Alcohol Abuse and Alcoholism and the National
Institute on Drug Abuse were honored with the prestigious Governor's
Award by the Academy of Television Arts and Sciences.

The NIH Public Trust Initiative recently launched the Partners in
Research program to identify and encourage innovative models of
community partnerships in research.

On September 12, in a ceremony in the U.S. Capitol, NIH and the National
Aeronautics and Space Administration (NASA) signed a memorandum of
understanding that will help American scientists use the International
Space Station to answer important questions about human health and
disease.

This past summer the Biomarkers Consortium launched a Web site
([www.biomarkersconsortium.org](http://www.biomarkersconsortium.org/))
as part of its efforts to encourage researchers to submit projects that
involve possible biomarkers.

Earlier this month, Dr. Zerhouni traveled to India and Japan, where he
participated in meetings with high-level scientists and officials and
delivered three major presentations. He was accompanied by Roderic I.
Pettigrew, M.D., Ph.D., Director of National Institute of Biomedical
Imaging and Bioengineering (NIBIB), and Roger I. Glass, M.D., Ph.D.,
Director of the Fogarty International Center (FIC). These meetings
underscore NIH's commitment to enhancing global collaboration in
biomedical research and to improving global health.

Dr. Kington took time to reflect on the NIH's loss of the Director of
the National Center for Complementary and Alternative Medicine (NCCAM)
Stephen E. Straus, M.D, who died of brain cancer on May 14, 2007 after a
valiant struggle.

Dr. Kington announced the August 2007 release of the NIH Genome Wide
Association Policy, which promotes data sharing to identify common
genetic factors that influence health and disease. The NIH continues to
implement the policy on enhancing public access to archived publications
resulting from NIH-funded research (Public Access Policy), which took
effect on May 2, 2005
([http://publicaccess.nih.gov](http://publicaccess.nih.gov/)).

David A. Schwartz, M.D., Director of the National Institute of
Environmental Health Sciences, has stepped down from his position so
that a comprehensive management assessment of that institute could be
conducted. Sam H. Wilson, M.D., is the Acting Director.

Dr. Kington recognized numerous NIH advances during the previous 6
months, including the participation of NIH staff in 31 congressional
hearings on topics including Alzheimer's disease, pandemic influenza,
stem cell research, emergency preparedness, postpartum depression, and
drug-resistant tuberculosis. President Bush has vowed to veto both the
House and Senate fiscal year (FY) 2008 appropriations bills, which
include \$110.9 million for the National Children's Study, a \$300
million transfer for global AIDS (the amount for fiscal year 2007 was
\$99 million), and direct funding for the Common Fund (\$495.153 million
in the House and \$531.3 million in the Senate); these bills include
language on mandatory public access.

In all, 10 appropriations hearings were held on the FY 2008 NIH
budget---3 in the House and 7 in the Senate. NIH continues to move
forward with implementing the requirements of the NIH Reform Act. In FY
2008, the NIH plans to spend a combined \$30 million from the Common
Fund on the first year of funding for two new initiatives associated
with the general theme of "new pathways to discovery"---the Human
Microbiome Project and the Epigenomics Program.

Patricia A. Grady, Ph.D., Director of the National Institute of Nursing
Research, and Yvonne T. Maddox, Ph.D., Deputy Director of the National
Institute of Child Health and Human Development, talked about the
innovative, new NIH Partners in Research program, a part of the NIH
Public Trust Initiative that grew from the Public Trust Workshop, hosted
by COPR in October 2004.

Jeremy M. Berg, Ph.D., Director of the National Institute of General
Medical Sciences provided an overview of the NIH Director's Pioneer and
New Innovator Awards, which evolved out of the NIH Roadmap.

Barbara Alving, M.D., Director of NCRR, reviewed NCRR's efforts in
community engagement, including the Clinical and Translational Science
Award, Institutional Development Award, and the Research Centers in
Minority Institutions programs.

Alan I. Leshner, Ph.D., Chief Executive Officer of the American
Association for the Advancement of Science and former director of the
National Institute on Drug Abuse, talked about the evolving relationship
between science and society.

Lawrence A. Tabak, D.D.S., Ph.D., Director of the National Institute of
Dental and Craniofacial Research, discussed the efforts of NIH to
enhance the peer review process.

Christina L. Clark, M.A., M.B.A., and James H. Wendorf, M.A., cochairs
of the COPR Meeting Agenda Work Group, provided an overview of the
COPR's Work Group Day.

Syed M. Ahmed, M.D., Dr. P.H., M.P.H., and Ann-Gel S. Palermo, M.P.H.,
cochairs of the COPR Role of the Public in Research Work Group, reported
the recommendations and the action items discussed during the breakout
session of their work group the previous day:

-   Develop proposed criteria and/or guidance for review panels to use
    for gauging community engagement.

-   Create broad guidelines for educating researchers and the lay public
    on community engagement.

-   Identify and propose definitions for community engagement and public
    participation.

# Anne Muñoz-Furlong and Brent M. Jaquet, cochairs of the COPR Communications Work Group, reported communications strategies discussed during the breakout session of the Communications Work Group on the previous day:

-   Embrace the NIH "Ambassador Program" to promote bilateral
    communication.

-   Promote the Ad Council Campaign in partnership with nonfederal
    groups.

-   Support a NIH community engagement activity modeled after
    AmericaSpeaks.

-   Examine the NIH Internet strategy and make suggestions to increase
    NIH's visibility among the public.

-   Explore opportunities for alliances with national civic
    organizations.

-   Increase activities aimed at children.

COPR members received updates from Annelise E. Barron, Ph.D., the
Advisory Committee Director liaison to COPR. Public Comments were
presented by Vlady Rosenbaum, Ph.D. of COPD-ALERT.

#  

**WELCOME AND INTRODUCTIONS**

**Raynard S. Kington, M.D., Ph.D.**

**Deputy Director, National Institutes of Health**

The 18th meeting of the National Institutes of Health (NIH) Director's
Council of Public Representatives (COPR) was held on October 26, 2007.
NIH Director Elias A. Zerhouni, M.D., could not attend because of
unexpected family commitments. NIH Deputy Director Raynard S. Kington,
M.D., Ph.D., welcomed the COPR members and presenters, and he recognized
the new Executive Secretary for the COPR, Kelli L. Carrington, M.A., and
thanked her for her hard work. Dr. Kington acknowledged Christina L.
Clark, M.A., M.B.A., and James H. Wendorf, M.A., the COPR's Meeting
Agenda Work Group cochairs, for their support of both the Council and
the NIH staff during the Council's recent transition period.

Dr. Kington recognized and thanked the four retiring COPR members: Wendy
Chaite, Esq.; Craig T. Beam; Michael Manganiello, M.P.A.; and Nicolas
Linares-Orama, Ph.D., M.P.A. Dr. Kington reported that Ms. Chaite and
Mr. Manganiello were unable to attend because of a family emergencies.
Dr. Kington gave a special thanks to COPR member Marjorie K. Mau, M.D.,
M.S., for agreeing to participate in the Director's Advisory Council's
Working Group on Peer Review and on the newly established NIH Council of
Councils. Dr. Kington thanked Matthew Margo, LL.M., for helping NIH to
produce a 30-minute interview with Dr. Zerhouni and CBS reporter Charles
Osgood for the CBS radio program CBS Cares.

**NIH DIRECTOR'S UPDATE**

**Raynard S. Kington, M.D., Ph.D.**

**Deputy Director, National Institutes of Health**

Dr. Kington reported that during the past year Dr. Zerhouni and his
office reached out to many groups around the country and around the
world, speaking with scientific associations, advisory councils, and
other constituencies in an effort to offer transparency about the
challenges that the current budget poses to NIH, researchers, and the
public, which ultimately benefits from NIH research.

**Status of the NIH Budget**

The President has vowed to veto both the House and Senate fiscal year
(FY) 2008 appropriations bills, which include \$110.9 million for the
National Children's Study, a \$300 million transfer for global AIDS (the
amount for FY 2007 was \$99 million), direct funding for the Common Fund
(\$495.153 million in the House and \$531.3 million in the Senate), and
language on mandatory public access. Dr. Kington stressed the need to
remain "cautiously optimistic" during a time of uncertain budgets. In
all, 10 appropriations hearings were held on the FY 2008 NIH budget---3
in the House and 7 in the Senate.

**Legislative Update**

NIH staff participated in 31 congressional hearings on such topics as
Alzheimer's disease, pandemic influenza, stem cell research, emergency
preparedness, postpartum depression, and drug-resistant tuberculosis.
NIH continues to move forward with implementing the requirements in the
NIH Reform Act of 2006.

The centerpiece of the act is the creation of the Division of Program
Coordination, Planning, and Strategic Initiatives (DPCPSCI), which
empowers NIH to move nimbly and quickly to address issues that will have
an effect on the broader field of biomedical research. The new law
restructured the reporting of NIH to Congress, eliminating many reports
and creating several others, including a new biennial report that is
intended to provide a more comprehensive, transparent, and accessible
portrait of NIH. This report is due to Congress in January 2008.

The act establishes the Council of Councils to advise the NIH Director
on matters related to DPCPSI policies and activities, including making
recommendations on trans-NIH research that would be supported by the
Common Fund, and establishes a Scientific Management Review Board to
review the organizational structure of NIH every 7 years.

In the House, in addition to the NIH Overview Hearing under the
chairmanship of Representative David R. Obey (D-WI), a single-theme
hearing was held: "Substance Abuse and Mental Health." In the Senate,
Senator Tom R. Harkin (D-IA) held an NIH Overview hearing and six
thematic hearings, which allowed each NIH Institute and Center to
testify before his subcommittee. This marked the first time in more than
a decade that such hearings have been held in the Senate.

### New Common Fund Initiatives 

The two initiatives to be launched in fiscal year 2008---the Human
Microbiome Project and the Epigenomics Program---are associated with the
general theme of "New Pathways to Discovery." These programs both
respond to the Common Fund goals of advancing basic knowledge and
developing new tools or resources that will be broadly applicable to
many research fields. The Human Microbiome Project will support the
development of new technologies and improve our knowledge of how changes
in the microbiome (e.g., bacteria, fungi, viruses) correlate with
changes in human health. The Epigenomics Program will facilitate the
development of new tools to more efficiently detect epigenetic changes
in the human genome structure and correlate them with specific diseases
or health conditions.

**Dr. Anthony S. Fauci Receives the National Medal of Science, the
Lasker Prize, and the George M. Kober Medal**

Anthony S. Fauci, M.D., Director of the National Institute of Allergy
and Infectious Diseases, received three distinguished honors this year.
On July 27, 2007, President George W. Bush awarded Dr. Fauci the 2005
National Medal of Science "for pioneering the understanding of the
mechanisms whereby the human immune system is regulated, and for his
work on dissecting the mechanisms of pathogenesis of human
immunodeficiency virus that has served as the underpinning for the
current strategies for the treatment of HIV diseases." Earlier this
year, Dr. Fauci also received the George M. Kober Medal of the
Association of American Physicians for his work in clinical medicine. On
September 28, 2007, Dr. Fauci received the 2007 Mary Wood Lasker Award
for Public Service for his role in developing two major U.S. public
health programs in AIDS and biodefense: the President's Emergency Plan
for AIDS Relief and Project Bioshield. Upon the announcement, Dr.
Zerhouni said, "As a clinician, researcher, and scientific leader, Dr.
Fauci has channeled his intellect, compassion, and vision into
discoveries and research programs that have transformed medicine and
public health. NIH is extremely proud of him."

**Nobel Prize Winners**

The 2007 Nobel Prize in physiology or medicine was shared by two
longtime NIH grantees, Mario R. Capecchi, Ph.D., of the University of
Utah School of Medicine, and Oliver Smithies, Ph.D., of the University
of North Carolina at Chapel Hill. The two researchers were honored,
along with Sir Martin J. Evans, Ph.D., of Cardiff University (Wales,
United Kingdom), for developing the powerful technology known as "gene
targeting."

### NIDA and NIAAA Receive Emmy Award 

The Academy of Television Arts and Sciences honored the National
Institute on Drug Abuse (NIDA) and the National Institute on Alcohol
Abuse and Alcoholism (NIAAA) with the prestigious Governors Award for
their work with HBO (Home Box Office) on the Addiction Project. This
documentary television series reveals the science of addiction and its
treatment, recovery, and costs to families and society. The award was
displayed for the Council members and meeting attendees.

**Public Trust Initiative: Partners in Research Program**

The NIH Public Trust Initiative recently launched the Partners in
Research program to identify and encourage innovative models of
community partnerships in research to facilitate the discovery of new
knowledge about the causation, treatment, and prevention of disease.
This innovative, new program solicits applications for research grants
to develop partnerships between scientific or research institutions and
their community organizations. COPR, through its work with the PTI and
the 2004 Public Trust Workshop, played an integral role in developing
the program.

# NIH and NASA Partner for Health Research in Space 

On September 12, 2007, in a ceremony at the U.S. Capitol, NIH and the
National Aeronautics and Space Administration (NASA) signed a memorandum
of understanding that will help American scientists use the
International Space Station (ISS) to answer important questions about
human health and disease. Dr. Zerhouni and NASA Administrator Michael D.
Griffin, Ph.D., welcomed scientists, astronauts, and senators to the
event, including Senators Kay Bailey Hutchison (R-TX), Barbara A.
Mikulski (D-MD), and Bill Nelson (D-FL). Senator Hutchison was
responsible for the legislation that formally designated the U.S.
portion of the ISS as a national laboratory. NIH is not funding NASA
research; instead, it is publicizing to the scientific community the
availability of the space station as an environment for research. NASA,
in turn, will advise researchers on implementing NIH-funded projects.

**Biomarkers Consortium Update**

During the summer of 2007, the Biomarkers Consortium launched a Web site
([www.biomarkersconsortium.org](http://www.biomarkersconsortium.org/))
as part of its efforts to encourage researchers to submit projects that
involve possible biomarkers. Biomarkers can measure the risk for disease
and the status of disease. They can be genetic, biochemical, or
immunological measurements of health, images, and cognitive measures,
among others.

**Dr. Zerhouni Travels to India and Japan**

Roderic I. Pettigrew, Ph.D., M.D., Director of National Institute of
Biomedical Imaging and Bioengineering (NIBIB), and Roger I. Glass, M.D.,
Ph.D., Director of the Fogarty International Center (FIC), accompanied
Dr. Zerhouni on a trip to India and Japan earlier this month. In India,
they met with the Prime Minister, Manmohan Singh, Ph.D., D.C.L. (hon),
and the Minister of Science & Technology, Kapil Sibal, LL.M., M.A. Dr.
Zerhouni spoke with representatives from the Department of
Biotechnology, and the Indian Council of Medical Research. Two
agreements were signed, the Letter of Intent on Translational Research
and the Joint Statement on the Development of Low-Cost Diagnostic and
Therapeutic Medical Technologies. The latter agreement, which will be
spearheaded by Dr. Pettigrew, is based on a shared commitment to improve
the health and well-being of the people of both countries by encouraging
collaborations and cooperation on the development of diagnostic and
therapeutic medical technologies that are inexpensive and operate at the
initial point of physician contact, or point of care. Directly following
the trip to India, they traveled to Kyoto, Japan, to participate in the
Science and Technology in Society (STS) Forum's fourth annual meeting.
These meetings underscore NIH's commitment to enhancing global
collaboration in biomedical research and to improving global health.

**Genome-Wide Association Studies**

NIH is interested in advancing genome-wide association studies (GWAS) to
identify common genetic factors that influence health and disease and is
working to ensure that GWAS data are used ethically and with the highest
possible standards for protecting the privacy and confidentiality of
participants. The final GWAS policy was released in August. NIH had
received more than 200 comments from the public during development of
the policy. The NIH GWAS policy will advance science for the benefit of
the public through the creation of a centralized data repository; this
policy becomes effective January 25, 2008. NIH has established a working
group to serve as the Advisory Committee to the Director; this group
will provide independent advice on protecting participants as well as
the data. A member of the COPR will be asked to participate in the
working group. A full update will be provided to the COPR at the
Council's meeting in April 2008.

**Leadership Update**

Dr. Kington memorialized for those present "an extraordinary leader,
outstanding scientist, and close friend to many," Stephen E. Straus,
M.D., former Director of the National Center for Complementary and
Alternative Medicine (NCCAM), who succumbed to brain cancer on May 14,
2007. As the first director of NCCAM, Dr. Straus was instrumental in
establishing it as a credible, rigorous scientific center. On June 11,
NIH held a memorial service in remembrance of Dr. Straus, his
accomplishments, and his contributions to science and public health.
Ruth L. Kirschstein, M.D., is acting Director of NCCAM.

David A. Schwartz, M.D., Director of the National Institute of
Environmental Health Sciences, stepped down from his position so that a
comprehensive management assessment of the institute could be conducted.
Samuel H. Wilson, M.D., is the Acting Director during this process. Dr.
Kington asked for comments.

**Discussion (COPR Members)**

Brent M. Jaquet asked Dr. Kington for an update on the scientific
management review board. Dr. Kington explained that this new board,
created under the NIH Reform Act of 2006, will create a forum to provide
advice related to NIH structure and functions. NIH IC (Institute or
Center) directors will hold 9 spots on the board, and the remaining 12
spots will be filled by members of the public. This committee will
develop a series of initiatives over the next year that could benefit
from the input of the advisory committee.

Mr. Wendorf asked Dr. Kington to identify the NIH programs that will
receive cuts in the coming year. Dr. Kington responded that NIH does not
expect to make cuts in the coming year, but that the increases will vary
widely across NIH. Dr. Kington pointed out that every NIH IC has its own
process for setting priorities and that NIH research moves more slowly
with less funding. However, it is unusual for NIH to completely stop
research in a particular area. Ms. Clark asked for science and research
highlights within the NIH intramural programs. Dr. Kington emphasized
that the NIH intramural program is a responsive, flexible, and unique
resource. It includes the NIH Clinical Center, which helps to translate
research from the bench to the bedside. Dr. Kington suggested that COPR
members receive a tour of the NIH Clinical Center at a future COPR
meeting.

Alan M. Krensky, M.D., NIH Deputy Director for the Office of Portfolio
Analysis and Strategic Initiatives, reported on discussions from a
recent NIH intramural retreat. More than 400 members of the NIH
immunology community came together as part of the NIH autoimmunity
initiative to discuss how to apply the current understanding of the
immune system to various diseases. Dr. Kington concluded by saying that
NIH hopes to develop initiatives in autoimmunity to allow synergy across
NIH.

Retiring member Dr. Linares-Orama read a poem he composed for the
Council entitled *Diversidad Esplendidad (Splendid Diversity).* See the
Appendix.

**NIH PUBLIC TRUST INITIATIVE: COPR UPDATE**

**Patricia A. Grady, Ph.D., and Yvonne T. Maddox, Ph.D.**

Dr. Grady, Director of the National Institute of Nursing Research, and
Yvonne T. Maddox, Ph.D., Deputy Director of the National Institute of
Child Health and Human Development, described the NIH Partners in
Research (PIR) program, a part of the NIH Public Trust Initiative (PTI).
The mission of the NIH PTI is to enable the public to understand and to
have full confidence in the research that NIH conducts and supports
across the country and throughout the world. The PIR program promotes
collaboration between community leaders and NIH-supported scientists to
improve the public's understanding of the benefits of health care
research. Researchers and community leaders apply as co-investigators to
receive grant funds.

Dr. Grady expects the scientific community to develop a deeper and
better understanding of what is important to the public and of how to
work with the public. "If people in the community do not learn about
health-related research findings, then we are not doing our job," said
Dr. Grady. She stressed the importance of improving the communication of
health-related findings to communities. In addition, NIH investigators
need to learn about the research needs and interests of the community.
Lastly, we expect our scientific community to have a deeper and better
understanding of what is important to the public and how to work with
the public area so that we can be better informed. Community leaders
from voluntary or professional organizations, health groups, faith-based
groups, and housing organizations will participate in research that
addresses the health needs of their communities. They will play a key
role in communicating health-related findings back to their communities.

Dr. Grady pointed out that the COPR, through its work with the PTI and
the 2004 Public Trust Workshop, played an integral role in developing
the program. A Request for Applications (RFA) was released October 12,
2007. Phase 1 of the initiative will provide grant support for
innovative activities for the Community Leader-Scientist partnership.

To receive funding, applicants must describe a proposed collaboration
between community partners and investigators. Phase II will consist of
the NIH Partners Workshop, where all the partners will meet at NIH to
discuss their programs, looking at their successes and challenges along
with their plans for the next project year. In 2008, 40 partner pairs
will receive funding through the Small Research Grant mechanism (R03).
Members of underrepresented groups are strongly encouraged to apply

Dr. Maddox described the NIH Partners Workshop and thanked the 27 NIH
Institutes and Centers for their support and willingness to review
applications. Community partners, research organizations, and program
officials from NIH will attend the workshop, where participants will
learn about true partnerships. Dr. Maddox provided examples of currently
funded true partnerships: HIV/AIDS researchers collaborating with
advocates on adherence to trials andresearchers in behavior working with
faith-based organizations to test methods for disseminating messages on
preventing obesity. Partners will learn how to share research findings
with the media. Dr. Maddox emphasized that progress in research depends
on the community's understanding and endorsing the benefits of research.
Her office plans to disseminate information on the needs of the
researchers to communities. Dr. Maddox expects this will increase the
community's willingness to partner with researchers.

**Discussion (COPR Members)**

Syed M. Ahmed, M.D., Dr. P.H., M.P.H., expressed concern that 1 year
would not be enough time for the NIH PIR program grantees to demonstrate
results; Dr. Grady agreed. She explained this is a pilot focused on
starting small discrete projects that will ideally demonstrate new
approaches for potential long-term studies.

Mr. Jaquet asked about NIH outreach plans to nonscientists unfamiliar
with the NIH grant proposal process. He wondered whether NIH would
depend on scientists in the community to spread the word. Dr. Grady
responded that NIH is circulating the RFA widely to public groups. "More
often the scientists will approach the community member, but we
anticipate it can go either way," explained Dr. Grady. She also pointed
out that the NIH PTI Web site includes a Frequently Asked Questions
section where community members can ask questions to NIH staff. Dr.
Kington added that a number of medical schools are beginning to create
dean-like positions at medical schools to facilitate community outreach,
serving as common touch stones for the program.

Ann-Gel S. Palermo, M.P.H., expressed interest in participating in the
NIH Partners Workshop to learn about the experiences of the grantees,
because the program relates to the COPR's broad focus on the role of the
public in research. Dr. Kington stated that NIH would plan to involve
the COPR during that time.

COPR members shared their passion for disseminating research results to
the public. Dr. Grady pointed out that the NIH Clinical Center is
pioneering an effort to share information on research with trial
participants sooner than was the case in past years.

Dr. Maddox added that NIH ICs are developing communications documents to
increase the dissemination of research results to the public.

**NIH PIONEER AND NEW INNOVATOR AWARDS**

**Jeremy M. Berg, Ph.D.**

Jeremy Berg, Ph.D., Director of the National Institute of General
Medical Sciences, talked about the NIH Director's Pioneer and New
Innovator Awards. The Pioneer Award evolved out of the NIH Roadmap. "We
are looking for innovative projects that probably would not be funded
through the regular NIH peer-review process," reported Dr. Berg. The
program seeks scientists with a track record of innovation who are
interested in working on novel projects with potentially high impact.

Dr. Berg described the five-page essay included in the application as a
critical component. Electronic reviewers independently evaluate
applications. The first year, NIH received more than 1,300 applicants,
interviewed approximately 20 finalists, and then made 9 awards in
September 2004. The second year, NIH made adjustments to prepare for the
large number of applications and to increase outreach to women and
members of underrepresented groups. NIH received more than 800
applications and ultimately made 13 awards in September 2005. This
second cohort included a younger, more diverse group of scientists. In
2006, more than 400 applications were reviewed, and 13 awards were made.
In 2007, NIH announced 12 awards. Information on the Pioneer Award,
including details on the 47 awardees since the program's inception, is
available at <http://nihroadmap.nih.gov/pioneer>.

A Joint Resolution of Congress in 2007 included funds to start a junior
pioneer--like program called the NIH Director's New Innovator Award
program. This program, launched in February 2007, funds exceptionally
innovative research with a potential for significant impact. Information
on the 2007 NIH Director's New Innovator Award is at
<http://grants.nih.gov/grants/new_investigators/innovator_award/index.htm>.
Awards will total up to \$1.5 million in direct costs over 5 years. Only
new investigators are eligible to apply (a new investigator is someone
who received his/her most recent doctoral degree or completed medical
internship and residency in 1997 or later). This person must never have
been a principal investigator on an R01 or equivalent NIH grant; in
addition, he or she must hold an independent research position at a U.S.
institution. Applicants must submit a 10-page essay that describes the
project's innovativeness, the investigator's qualifications (including
evidence of creativity and innovativeness), a biographical sketch, and a
list of current and pending research support. After receiving more than
2,100 applications, NIH announced 30 awardees in September 2007.

**Discussion (COPR Members)**

Annelise E. Barron, Ph.D., suggested that NIH broaden the Pioneer and
New Innovator Awards programs and noted the potential global impact of
these awards.

Ms. Clark asked how applicants responded to the concept of high-risk,
high-return projects. Dr. Berg responded that future evaluations of
outcomes may begin to answer this question. Dr. Kington pointed out the
importance of considering the willingness of the agency to tolerate
failure. If all projects succeed they are probably not high risk.

Dr. Mau asked whether New Innovator awardees could become Pioneer
awardees in the future. Dr. Berg explained that both the New Innovator
and Pioneer Awards are one-time opportunities and are not renewable.
However, New Innovator awardees could apply for Pioneer Awards in the
future.

COPR members expressed their enthusiasm for the shortened application
process. Dr. Kington added that NIH peer-review committees are
considering a major proposal to shorten the grant application process.

**NCRR COMMUNITY ENGAGEMENT ACTIVITIES**

**Barbara Alving, M.D.**

Barbara Alving, M.D., Director of the National Center for Research
Resources (NCRR), discussed the Center's community engagement
activities. NCRR launched the Clinical and Translational Science Award
(CTSA) program, funding 12 academic health centers in October 2006, to
create an academic home for clinical and translational science at
institutions nationwide. The CTSAs
([**www.CTSAWeb.org**](http://www.CTSAWeb.org/)) help to eliminate
institutional barriers, integrate resources and training, speed up
clinical and translational science, and enhance efforts to engage the
community.

In 2007, NCRR funded an additional 12 academic health centers. Through
the CTSA Consortium, grantees have the opportunity to collaborate with
private and public organizations, research centers in minority
institutions, underserved populations, National Primate Research
Centers, and National Cancer Institute Centers. Developing outcomes for
evaluating research in community engagement was identified as a priority
by the CTSA Community Engagement Steering Committee. Dr. Alving
described this steering committee as a trans-NIH strategy to ensure that
efforts to engage the community are maximized and sustained over time.

The CTSA Supplement Awards provide funds for pilot projects focused on
the health needs identified by diverse communities through interviews
and surveys. These awards test the concept of recruiting and supporting
practitioners to engage in community-based clinical research.

Dr. Alving also reported on two other NCRR-funded programs: the
Institutional Development Award (IDeA) program
([www.ncrr.nih.gov/RIidea](http://www.ncrr.nih.gov/RIidea)) and the
Research Centers in Minority Institutions (RCMI) program
[(]{.underline}[www.ncrr.nih.gov/RIrcmi](http://www.ncrr.nih.gov/RIrcmi)).
The IDeA enables states, some without medical schools, to partner with
medical schools and research-intensive universities to train rural and
minority populations in biomedical research. The RCMI Translational
Research Network facilitates both the bench-to-clinical-trial transition
and community outreach.

In May and September 2007, NCRR held workshops on fostering
collaborative community-based clinical and translational research.
Recommendations from these workshops will help to prioritize future
supplement awards. Key recommendations included:

-   Develop a community-based research infrastructure to sustain
    partnerships.

-   Fund training programs in community competence for academic health
    centers.

-   Encourage communities to identify their research needs.

-   Award grants to community-based organizations with academic health
    centers as partners.

-   Build health outcome measures into protocols and evaluations.

-   Ensure that accountability to the community extends beyond the
    initial stages of research.

-   Work closely with health care funders to improve the translation of
    knowledge into practice.

**Discussion (COPR Members)**

Cynthia A. Lindquist, Ph.D., M.P.A., asked NIH to engage communities in
a dialogue about their needs before starting their research. She also
emphasized that research must be mutually beneficial. Dr. Alving
suggested that communities take the initiative by explaining to
investigators who they are and what they represent. She also noted that
communities could bring new models of health care to the table.

Dr. Linares-Orama asked about NIH strategies to close the gap between
knowledge and practice in health care. Dr. Alving responded that all NIH
ICs actively work to close this gap. She suggested that a systems
approach to rethinking the health care system is needed. Dr. Kington
added that the Clinical Associates Program helps to close the gap
between knowledge and practice by connecting researchers to networks of
practicing doctors.

Dr. Ahmed asked about NIH plans to evaluate the CTSAs. Dr. Alving
clarified that each CTSA applicant institution must describe how it
plans to conduct evaluations. NIH also developed an evaluation committee
for the CTSA consortium and is working on benchmarks. CTSA awardees will
be asked to report on their progress during site visits and before their
5-year renewals.

Elmer R. Freeman, M.S.W., shared his conviction that community
organizations need to build capacity and infrastructure to fully
participate in community-based research.

Ms. Palermo asked to what extent the community engagement component was
taken into consideration for the development of the CTSAs and to what
extent the NCRR will ensure that the community engagement experts work
together. Dr. Alving noted that the structure is to include a community
engagement group that comprises representation from all the CTSAs and
NIH. She also noted that sustainability must come from the community
outreach experts funded across the United States.

David B. Abrams, Ph.D., Director of the Office of Behavioral and Social
Sciences Research (OBSSR), noted that the community engagement steering
committee is the most active of all the CTSA steering committees. Each
CTSA has more than one representative on this steering committee, which
is supported by an NIH subcommittee that meets on a regular basis and
cuts across all the NIH institutes. The representative group is made up
of both the community partners and the principal investors and the
scientists in the CTSAs.

Elizabeth Furlong, J.D., R.N., Ph.D., asked about what training programs
for academics and community constituents were going to be funded and how
communities were going to be encouraged to identify their research needs
based on the recommendations made at the May workshop. Dr. Alving noted
that the proceedings of the May workshop will be circulated for feedback
in the coming weeks.

\[A group picture with Dr. Kington was taken during the lunch break.\]

**FROM PUBLIC UNDERSTANDING TO PUBLIC ENGAGEMENT**

**Alan I. Leshner, Ph.D.**

Alan I. Leshner, Ph.D., chief executive officer of the American
Association for the Advancement of Science (AAAS), discussed the
evolving science-society relationship and the need to move from public
understanding of science to public engagement. Science and technology
are embedded in every aspect of modern life. Tension between science and
society results from conflicts between scientific findings and core
human values and beliefs. Dr. Leshner suggested that society now wants
to influence science rather than having a situation in which we have
only science influencing society. The growing divide between science and
the rest of society could have negative consequences for both science
and society. Dr. Leshner quoted Abraham Lincoln: "Public sentiment is
everything. With public sentiment, nothing can fail. Without it nothing
can succeed."

People need to know more about science as an enterprise. Dr. Leshner
suggested that advocating for more public education in science is not
enough, because not all problems result from a lack of understanding.
Instead, greater efforts to engage the public would provide mutual
benefit. What is public engagement? It involves listening and responding
to the public about its concerns, priorities, and questions about
science and technology. A recent Institute of Medicine roundtable on
evidence-based medicine emphasized the need for the active involvement
of patients in developing research questions, developing evidence, and
disseminating findings. Receiving help from the public in forming the
research agenda is a critical part of public engagement.

Public engagement can happen in a variety of ways:

# Holding public forums/town meetings.

# Visiting with community groups.

# Holding problem-solving sessions with small groups. 

# Exploiting natural opportunities such as science museums, physician's offices, and everyday activities.

# 

# For example, the AAAS "Glocal Strategy" brings global issues to the local level by working with local opinion leaders. Dr. Leshner emphasized that governmental agencies should initiate public engagement activities because these agencies are accountable to the public. He suggested that scientists could contribute to public engagement efforts in several ways:

# Build relationships with stakeholders.

# Build communication around issues informed by science and technology.

# Practice openness by putting information, ideas, and debate in the public realm.

Dr. Leshner pointed out that researchers must be trained to engage with
the public. Learning how to talk to the press about research results and
how to reach out to neighbors and community groups are necessary skills.
In efforts to engage the community, scientists should stick to facts and
not express their personal values or go outside their field of study.

**Discussion (COPR Members)**

Mr. Margo wondered whether it was too late to educate scientists about
community engagement after graduation. Dr. Leshner responded that it was
not too late. He pointed out that because community engagement is an
acquired skill, mechanisms to teach it must be in place.

Dr. Ahmed asked for suggestions on how to work with academic leadership
on public engagement activities. Dr. Leshner responded that most
university presidents know they need to interact more with their
communities. However, senior-level department heads often question the
value of such interaction. He emphasized that ways to reward people for
community engagement must be developed.

**NIH PEER REVIEW**

**Lawrence A. Tabak, D.D.S, Ph.D.**

Lawrence A. Tabak, D.D.S., Ph.D., Director of the National Institute of
Dental and Craniofacial Research, described efforts to enhance peer
review at NIH. The increasing breadth, complexity, and interdisciplinary
nature of biomedical science are creating new challenges for the NIH
system: peer review is a key component of this system. NIH must continue
to adapt to the rapidly changing fields of science and to growing public
health challenges. Dr. Tabak emphasized that NIH must work to ensure the
processes used to support science are as efficient and effective as
possible for both applicants and reviewers.

Dr. Tabak described a self-study by NIH in partnership with the
scientific community to strengthen peer review
(<http://enhancing-peer-review.nih.gov/>). Because NIH seeks input from
the broadest scientific community possible, two committees were
established: (1) the external Advisory Council to the Director Working
Group on Peer Review and (2) the internal Steering Committee Working
Group on Peer Review. NIH completed a request for information (RFI) as
part of this self-study. In the RFI, NIH asked for input on the
challenges in the peer review process and solutions to these challenges.
Drs. Zerhouni and Tabak also held two teleconferences with deans from
around the country to discuss issues regarding peer review. NIH
conducted five regional town meetings on this topic.

Dr. Tabak shared emerging ideas of potential interest to the COPR:

-   Criteria and focus of review.

-   Many suggestions of how NIH should change its review criteria to
    increase risk taking and/or innovation and/or public health focus.

-   Reviewing the project vs. the person.

-   Need for new models of review that include more than the customary
    two or three primary reviewers.

-   Suggestions on how to establish a dialogue between applicant and
    reviewer to correct factual errors during the review in real time.

-   Different types of review are needed for different types of science.

-   Improving the quality of review by having an ombudsperson on each
    study section.

-   Some reviewers would benefit from more context.

-   Possible need for a third level of review that assesses the impact
    on public health or on society.

-   Need for reviewers to provide more useful feedback to applicants in
    addition to their application score.

**Discussion** (**COPR Members)**

Ms. Palermo emphasized the importance of redefining "peer" in peer
review to extend beyond scientists.

Dr. Linares-Orama expressed concern about the importance of eliminating
subjectivity in the peer-review process. Dr. Tabak responded that this
issue was raised in the NIH self-study process. He also added that NIH
is gathering information on possible solutions to this problem.

Mr. Jaquet asked whether common themes arose from the five town hall
meetings. Dr. Tabak responded that the concept of the community as an
equal partner in the peer review process arose again and again.

**OVERVIEW OF THE COPR WORK GROUP DAY AND REPORT FOR THE NIH DIRECTOR**

**Christina L. Clark, M.A., M.B.A., and James H. Wendorf, M.A.**

\[insert "view the presentation (pdf)\]

Ms. Clark and Mr. Wendorf, cochairs of the fall 2007 Meeting Agenda Work
Group, provided Dr. Kington with an overview of the Work Group Day that
took place the previous day (October 25). Ms. Clark thanked COPR members
for their public engagement activities during the year. She also thanked
the NIH Public Liaison Officers and other NIH staff who attended and
supported the Work Group Day.

Mr. Wendorf summarized the agenda:

-   An update by Ezekiel J. Emanuel, M.D., on efforts by NIH to engage
    minority communities in clinical research.

-   A presentation by Diane R. Brown, Ph.D., on the importance of social
    and cultural factors in population-based health research.

-   An update by Sara A. Keim, M.A., M.S., on community engagement
    efforts in the National Children's Study.

-   A description by Joseph P. Goldman, M.P.P., on AmericaSpeaks'
    efforts to engage citizens in public decision making.

-   An overview by Jacqueline Dunbar-Jacob, Ph.D., R.N., FAAN, and Lee
    Hipps on the Clinical and Translational Science Institute (CTSI)
    Community PARTners (Partnering to Assist Research and Translation)
    Program at the University of Pittsburgh.

-   A communications update by John T. Burklow.

Mr. Wendorf explained that through consensus building the COPR
identified the following action item for the October 2007 COPR meeting:
identify ways to encourage researchers to involve the public in
research, with an emphasis on community engagement.

**UPDATE: WORK GROUP ON THE ROLE OF THE PUBLIC IN RESEARCH**

**Syed M. Ahmed, M.D., Dr. P.H., M.P.H., and Ann-Gel S. Palermo,
M.P.H.**

\[insert "view the presentation (pdf)\]

Dr. Ahmed and Ms. Palermo reviewed the scope of work, recommendations,
and deliverables for the Role of the Public in Research Work Group. The
work group focused on the following action item: Identify ways to
encourage researchers to involve the public, with an emphasis on
community engagement. Ms. Palermo said that the work group supports the
overarching principle of transforming the clinical research enterprise
through discussion of the participatory aspect of research, the 4th "P"
described in Dr. Zerhouni's framework for the *Future Paradigm of
Medicine: Predictive, Personalized, Preemptive, and Participatory*.

Dr. Ahmed reviewed the work group's action items to be addressed between
October 2007 and October 2008:

-   Develop proposed criteria and/or guidance for review panels to use
    for gauging community engagement.

-   Create broad guidelines for educating researchers and the lay public
    on community engagement.

-   Identify and propose definitions for community engagement and public
    participation.

**UPDATE: COMMUNICATIONS WORK GROUP**

# Anne Muñoz-Furlong and Brent M. Jaquet

\[insert "view the presentation (pdf)\]

Anne Muñoz-Furlong and Mr. Jaquet summarized the goals of the
Communications Work Group:

-   Promote awareness of NIH among the public.

-   Act as a vehicle for communication from the public to NIH.

-   Recommend communication strategies that support the work of the
    COPR.

Ms. Muñoz-Furlong and Mr. Jaquet reviewed the work group's
recommendations:

-   Embrace the NIH "Ambassador Program" as a way to promote bilateral
    communication.

-   Promote the Ad Council Campaign in partnership with nonfederal
    groups.

-   Support a community engagement activity modeled after AmericaSpeaks
    that would involve NIH staff, grantees, and the public.

-   Examine the NIH Internet strategy and make suggestions for greater
    visibility of NIH among the public.

-   Explore opportunities for alliances with national civic
    organizations.

-   Increase activities aimed at children.

**Discussion (COPR Members)**

COPR members agreed on the importance of making NIH information more
accessible to the public. The members suggested that NIH make the COPR
more visible on the NIH Web site.

Valda Boyd Ford, M.P.H., M.S., R.N., suggested that information on NIH
needs to appear in places such as newspapers owned by African Americans.
Mr. Margo described the COPR's work as "putting a human face on NIH
research and bringing NIH into people's homes."

Ms. Muñoz-Furlong emphasized the importance of fueling the emotional
aspects of health and disease that appeal to the public. She suggested
that NIH create a place such as YouTube
([http://www.youtube.com](http://www.youtube.com/)) where people could
post their stories about illness.

Dr. Kington agreed that even though the NIH Web site receives popular
ratings, many people do not access it.

Mr. Burklow thanked COPR for its input and emphasized how important it
has been to have COPR's contributions during the meeting today and
through the past few years, supporting NIH's communications strategies
and bringing new ideas to the forefront.

**PUBLIC COMMENT**

Public comments were received in advance and made available to the
Council members and to meeting attendees. Comments were presented at the
meeting by Vlady Rozenbaum, Ph.D., founder and administrator of
COPD-ALERT, a U.S. support and advocacy group for people with chronic
obstructive pulmonary disease (COPD). Dr. Rozenbaum discussed his
support of NIH efforts to build collaborations between scientists and
communities and suggested that while the awareness campaign for COPD,
sponsored by the National Heart, Lung, and Blood Institute, has made in
roads, more efforts are needed.  Dr. Rozenbaum concluded that rising
health care costs and increasing morbidity and mortality rates make COPD
a critical issue for research and hopes that public engagement in
research efforts will help address COPD and other health conditions.

**ACD LIAISON REPORT**

**Annelise E. Barron, Ph.D.**

Dr. Barron reported on the meeting of the Advisory Committee to the
Director (ACD), which occurred on June 8, 2007. Ms. Chaite was unable to
attend the COPR meeting. The ACD members and invited speakers discussed
the NIH Reauthorization (Dr. Kington), the progress of the NIH Working
Group on Women in Biomedical Careers (Vivian W. Pinn, M.D.), updates on
NIH peer review (Antonio Scarpa, M.D., Ph.D., and Dr. Tabak), progress
in the NIH Director's New Innovator Award program (Dr. Berg), updates on
the NIH Director's Bridge Awards (Norka Ruiz Bravo, Ph.D.), and a new
"Facts and Figures" Web-based system to report data on NIH-funded
research (Sally Rockey, Ph.D.).

The ACD members discussed a broad range of NIH issues and approved the
NIH's interest in supporting young investigators and high-risk,
high-impact research. Ms. Chaite suggested that the new Scientific
Management Review Board include public representatives. In response to
discussion on ACD and COPR interactions during the ACD meeting, Dr.
Zerhouni proposed that ACD and the COPR hold a joint meeting sometime in
the future.

# NIH DIRECTOR AND COPR MEMBER SUMMARY AND NEXT STEPS

Dr. Kington noted that the COPR's efforts in the area of communications
have had a direct impact on how NIH prioritizes its communication
strategy. He thanked the COPR for its work on community engagement and
noted that it will help NIH to develop more rigorous criteria for
evaluating efforts in community engagement.

Dr. Kington thanked the COPR members for their input. Ms. Carrington
noted that the next meeting of the COPR will take place April 17--18,
2008.

**ADJOURNMENT**

Dr. Kington and Ms. Clark adjourned the meeting.

**APPENDIX**

Retiring member Dr. Linares-Orama read a poem he composed for the
Council entitled *Diversidad Esplendidad (Splendid Diversity).*

**DIVERSIDAD ESPLENDIDA**

From dissimilar upbringings,

We connect for one assertion,

And recognize unfair ill health,

Anguish, pain, solitude, despair,

With thoughts for remediation.

We turn down empty prejudice,

To converse shared mind options,

And seek a better humanity,

From a diverse capacity,

Of mixed memoirs and notions.

Along with the good will of all,

Accepting the want for variance,

To grasp tangled human natures,

And the joint need for our neighbor,

We shape a global acquaintance.

Towards a bright life for people,

By ***participatory*** plans,

We, melting pot constituents,

With essence pride as element,

Now claim our passage, grand!

By: Nicolás Linares-Orama

FILIUS Institute

University of Puerto Rico

NIH COPR Member

October 26, 2007

**LIST OF ABBREVIATIONS AND ACRONYMS**

AAAS American Association for the Advancement of Science

ACD Advisory Committee to the Director

AHRQ Agency for Healthcare Research and Quality

CBPR Community-Based Participatory Research

CC Clinical Center

CDC Centers for Disease Control and Prevention

CIT Center for Information Technology

COPD chronic obstructive pulmonary disease

COPR Council of Public Representatives

CTSA Clinical and Translational Science Awards

DPCPSI Division of Program Coordination, Planning, and Strategic
Initiatives

DHHS Department of Health and Human Services

FIC Fogarty International Center

FNIH Foundation for the National Institutes of Health

GWAS genome-wide association studies

IC institutes and centers

ISS International Space Station

IHS Indian Health Service

IdeA Institutional Development Award

IOM Institute of Medicine

IRB institutional review board

NASA National Aeronautics and Space Administration

NCCAM National Center for Complementary and Alternative Medicine

NCHMD National Center for Minority Health and Health Disparities

NCI National Cancer Institute

NCRR National Center for Research Resources

NHLBI National Heart, Lung, and Blood Institute

NHGRI National Human Genome Research Institute

NIAAA National Institute on Alcohol Abuse and Alcoholism

NIAID National Institute of Allergy and Infectious Diseases

NIBIB National Institute of Biomedical Imaging and BioEngineering

NIDA National Institute on Drug Abuse

NICHD National Institute of Child Health and Human Development

NIDCR National Institute of Dental and Craniofacial Research

NIDDK National Institute of Diabetes and Digestive and Kidney Diseases

NIGMS National Institute of General Medical Sciences

NIH National Institutes of Health

NINR National Institute of Nursing Research

NLM National Library of Medicine

OBSSR Office of Behavioral and Social Sciences Research

OPASI Office of Portfolio Analysis and Strategic Initiatives

OMB Office of Management and Budget

PIR Partners in Research

PTI Public Trust Initiative

RCMI Research Centers in Minority Institutions

RFA Request for Applications

RFI Request for Information