Kelli L. Carrington, MA

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NIH Directors Council of Public
Representatives Engaging Communities Across the
Nation
Celebrating 10 Years of Public Engagement in
Research Through COPR

• Kelli L. Carrington, MA
• Coordinator, NIH Directors Council of Public
  Representatives
• May 14, 2009

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NIH Directors Council of Public Representatives
(COPR)

• Federal Advisory Committee
• Consists of 21 members of the public who provide
  input and feedback from the publics perspective
  on emerging health issues and research priorities
  as identified by the COPR and/or the NIH Director
• Annual Nomination and Selection Process
• Biannual Meetings

• Members include
• Patients
• Family members of patients
• Health care professionals
• Scientists
• Communicators in health, medicine, or science
• Academicians
• Public servants
• Professionals from health- and science-relatednon
  profit agencies and professional societies

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Office of Communications and Public Liaison,
Office of the DirectorJohn Burklow, Associate
Director
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Evolution of COPR Institute of Medicine Report,
July 1998

• The director of the NIH should establish and
  appropriately staff a Directors Council of
  Public Representatives, chaired by the NIH
  director, to facilitate interactions between the
  NIH and general public. Recommendation 8

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Evolution of COPR NIH Leadership with COPR
Through the Years

• Dr. Harold Varmus, Director, 1993-1999
• First call for COPR nominations, November 1998
• COPR associates established
• First council meeting in April 1999
• Examples of topics explored with COPR
• Public engagement at NIH
• Patient access to clinical trials
• Clinical trials database
• Health disparities

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Evolution of COPR NIH Leadership with COPR
Through the Years
Dr. Ruth Kirschstein, Acting Director, 2000-2002

• Council defines COPR operational guidance
• Examples of topics explored with COPR
• Clinical trials, health disparities and
  underserved populations, human research
  protections
• 1st COPR Report Human Research Protections in
  Clinical Trials A Public Perspective October
  2001

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Evolution of COPR NIH Leadership with COPR
Through the Years

• Dr. Elias Zerhouni, NIH Director 2002-2008
• Examples of topics explored via panels,
  workgroups and meeting participation
• NIH Roadmap for Medical Research
• Peer Review Enhancement Initiative
• Research, Coding, and Disease Categorization
• Nanotechnology Task Force on Communications
• Genome-wide Association Studies Policy
• Science of Science Management

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Evolution of COPR NIH Leadership with COPR
Through the Years

• Dr. Elias Zerhouni, NIH Director 2002-2008
• COPR Reports and Recommendations
• Report on the Organizational Structure and
  Management of NIH December 2002
• Public Library of Science December 2002
• COPR response to IOM Report on Organizational
  Structure and Management of the NIH January
  2004
• Enhancing Public Input and Transparency in the
  NIH Research Priority-Setting Process April
  2004
• Public Trust in Clinical Research January 2005
• COPR Letter to the NIH Director on Communications
  March 2008

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Evolution of COPR NIH Leadership with COPR
Through the Years
Dr. Raynard Kington, NIH Acting Director
2008-Present

• COPR Recommendations, Oct. 2008
• Definitions for Community Engagement and Public
  Participation
• Guidelines for Educating Researchers and the Lay
  Public in Community Engagement
• Guidance for Peer Review Panels in Gauging
  Community Engagement
• COPR Going Forward
• COPR-NIH Request for Information on Consumer
  Health Information-Seeking Behaviors

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COPRs Thank you to Dr. Zerhouni and Dr.
KingtonOctober 31, 2008
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Recent COPR Recognition

• COPR Editorial on the Importance of Public
  Participation in Research
• COPR Recognized as a Best Practice by Avalere
  Health

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COPR As NIH Ambassadors
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COPR As NIH Ambassadors
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Building Bridges and Engaging the Public Examples
of NIH activities

• Directors Council of Public Representatives
  (COPR)
• Community Forums
• Public and Town Hall Meetings
• Formal requests for public input (e.g.,
  strategic plans)

• NIH Websites (e.g., Research Results for the
  Public)
• Public outreach campaigns
• Online and mailed Newsletters
• Exhibits at health fairs and community events
• Public inquiry response

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Alumni Perspectives on COPR

• COPR gave me a profound insight on what matters
  to the NIH community, what matters to outside lay
  and academic communities, and how to coordinate
  all of these concerns for the benefit of the
  people we serve, be them White, Black, Latinos,
  Native Americans or Asians.
• Dr. Nicolas Linares-Orama, Professor and
  Director, The Filius Research Institute,
  University of Puerto Rico

The opportunity to interact with senior NIH staff
and my fellow COPR members under the leadership
of Dr. Zerhouni and the Office of the Director
led to my foundation establishing a new, clear
focus on clinical trials within an expanded
vision of cooperation between scientist and
non-scientist. Christina Clark, President,
Foundation for Interdisciplinary Motor Neuron
Medicine
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Alumni Perspectives on COPR
Our individual and collective voices bring news
from our communities, where research impacts
individuals. We also help NIH communicate the
value of its research. This two-way role has been
important for the learning disabilities
community, since accurate information is needed
to dispel myths and fight prejudice. James
Wendorf, Executive Director, National Center for
Learning Disabilities

Being on COPR I was better informed and
subsequently was able to share good information
with my community about the many aspects of NIH
and the respective institutes.  NIH is a unique
and special agency that does impact the lives of
many and in many ways. Dr. Cynthia Lindquist,
President, Candeska Cikana (Little Hoop)
Community College
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Visit http//copr.nih.gov/
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Thank you to the COPR members and alumni

• Syed M. Ahmed, M.D., M.P.H., Dr.P.H., FAAFP
• Michael D. Anderson, Ph.D.
• James J. Armstrong, B.A., APR
• Craig T. Beam, B.A.
• Micah L. Berman, J.D.
• Evelyn J. Bromet, Ph.D.
• Ruth C. Browne, Sc.D.
• Nancye W. Buelow
• Barbara D. Butler, B.S.
• Theodore J. Castele, M.D.
• Wendy Chaite, Esq.
• Robin Chin, RPh
• Lora M. Church, B.S.
• Christina L. Clark, M.A., M.B.A.
• Luz Claudio, Ph.D.
• Naomi Cottoms, M.S.
• Linda Crew, RN, M.B.A.
• Mary desVignes-Kendrick, M.D., M.P.H.

• Melanie C. Dreher, Ph.D., RN
• Frances J. Dunston, M.D., M.P.H.
• Pamela Fernandes
• Valda Boyd Ford, M.P.H., M.S., RN
• Elmer R. Freeman, M.S.W.
• David Frohnmayer, J.D.
• Elizabeth Furlong, Ph.D., J.D., RN
• Sam P. Giordano, M.B.A., RRT, FAARC
• Rafael Gonzalez-Amezcua, M.D.
• Ellen E. Grant, Ph.D.
• Debra S. Hall, Ph.D., RN, CCRN
• R. Michael Hill, Ed.D.
• Kimberley Hinton, B.A.
• Brent M. Jaquet, B.A.
• Jim Jensen
• Nicole Johnson, M.A., M.P.H.
• Vicki Kalabokes
• James Kearns

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Thank you to the COPR members and alumni

• Barbara B. Lackritz
• Joan H. Lancaster, B.S.
• Debra R. Lappin, J.D.
• Lydia Lewis
• Nicolas Linares-Orama, Ph.D.
• Cynthia A. Lindquist, Ph.D.
• Ted Mala, M.D., M.P.H.
• Michael Manganiello, M.P.A.
• Matthew Margo, LL.M.
• Robert G. Martin, Ed.D.
• Marjorie K. Mau, M.D., M.S., FACP
• Roland McFarland
• Isaac D. Montoya, Ph.D.
• Dawna Torres Mughal, Ph.D., RN, LDN
• Rodrigo A. Muñoz, M.D.
• Anne Muñoz-Furlong, B.A.
• Eileen S. Naughton, J.D.
• William D. Novelli

• Ann-Gel S. Palermo, M.P.H.
• Carlos A.O. Pavão, M.P.A.
• Rosemary B. Quigley
• Maurice F. Rabb, M.D.
• Robert J. Roehr
• Lawrence B. Sadwin
• John Shlofrock
• Ellen V. Sigal, Ph.D.
• Leonard J. Tamura, Ph.D.
• Zelda D. Tetenbaum, M.Sc.
• Donald E. Tykeson, B.S.
• Thomas Vaalburg
• John W. Walsh, B.S.
• James H. Wendorf, M.A.
• James S. Wong, Ph.D.
• Douglas Q. L. Yee, M.B.A.