Yee Receives Award from American Lung
Association of Hawaii
When: December 6, 2002
COPR member Doug Yee recently received the 2002 Mauli Ola
(Breath of Life) Award from the American Lung Association
of Hawaii (ALAH) for his contributions toward finding a cure
for lung disease as a longtime volunteer for the organization.
As a COPR member, Mr. Yee has contributed to the work of the
NIH through a variety of activities, including helping to
plan and oversee the November 2001 NIH-Hawaii Partnership,
a series of outreach meetings and site visits; giving speeches
about NIH at various community and professional groups; serving
on work groups such as the COPR Government Performance and
Results Act Assessment Working Group; and participating in
the orientation of new COPR members. Mr. Yee's contributions
to the NIH, and to the ALAH, were recently recognized by NIH
Deputy Director Ruth L. Kirschstein, M.D., who said, "Mr.
Yee's dedication and community spirit are exemplary, as evidenced
by his involvement with his local community and the work he
has done at the NIH." The Mauli Ola award is given each
year to an individual who has made significant contributions
to the ALAH in fulfilling its mission to prevent lung disease
and promote lung health. Mr. Yee is also the recipient of
the National American Lung Association's Volunteer Excellence
Award.
Tamura Helps Bring EYE SITE Exhibit
to Denver
When: November 2002
COPR member Len J. Tamura, Ph.D., attended a host committee
meeting of vision-related organizations in the Denver, CO,
metro area that have joined together to host a tour of the
National Eye Institute's (NEI's) THE EYE SITE: A Traveling
Exhibit on Low Vision for Shopping Centers. The exhibit is
scheduled to visit four Denver area malls during the spring
and summer of 2003. Launched in 2001, THE EYE SITE provides
information on low vision in English and Spanish and features
five kiosks with an interactive multimedia touch screen program,
a display of assistive devices, and a list of local resources.
By the end of this year, two identical exhibits will have
toured 14 states and visited 32 malls.
Quigley Presents COPR Overview, Human
Research Protections Report
When: October 24, 2002
COPR member Rosemary Quigley provided an overview of the
role of COPR at the NIH and presented her perspective on the
COPR's first released report, Human Research Protections
in Clinical Trials: A Public Perspective, at the October
24, 2002, meeting of the National Heart, Lung, and Blood Advisory
Committee. During the meeting, Ms. Quigley emphasized questions
that come up for both public members on IRBs and patients
considering enrollment in trials. She drove home the message
that patients should have access to as much information as
they want about a trial, including current adverse event data
and full research protocols. A vigorous Q & A on how to
improve informed consent ensued.
Hinton, Hall, Tetenbaum Attend Menopausal
Hormone Therapy Workshop
When: October 2324, 2002
COPR members Kimberly Hinton, Debra Sue Hall, Ph.D.(c), and
Zelda Tetenbaum attended the two-day NIH Scientific Workshop:
Menopausal Hormone Therapy to observe the conference as public
representatives and to provide follow-up comments and recommendations
to Deputy NIH Director Ruth Kirschstein, M.D, from a public
perspective. The purpose of the conference was to review results
from the recently halted Women's Health Initiative (WHI) clinical
trial studying the combination of estrogen and progestin in
the context of other completed or ongoing Federally-funded
research on menopausal combination hormone therapy (HT). The
conference was also designed to help clinicians and patients
understand the implications of current knowledge on decisions
regarding short- and long-term use of HT.
Ms. Hinton and Ms. Hall made a number of recommendations
following the conference. Ms. Hinton emphasized the importance
of making the research information available to the public
in an understandable format. Ms. Hall recommended further
education about treatment options, particularly for women
suffering from perimenopausal and menopausal symptoms, and
suggested that WHI investigators speak at public forums. She
also pointed to the need for research on quality of life issues
for menopausal women and additional education for health care
providers in this area. Ms. Tetenbaum said of the conference,
"From the public perspective, I know that many women
were looking for definitive answers. The results of the study
did not lend themselves to these kinds of answers
The
results were presented in such a way as to show clearly that
final decisions regarding risks and benefits needed to be
made on an individual basis."
Kalabokes Assists with Town Meeting
on Breast Cancer, Environment
When: October 78, 2002
COPR member Vicki Kalabokes helped bring the representatives
from the National Institute of Environmental Health Sciences
(NIEHS) to Marin County, CA, as part of a town meeting to
address the issue of breast cancer and the environment. Ms.
Kalabokes facilitated the initial contacts between NIEHS and
Marin County and helped identify a town meeting as one strategy
to address the issue of high breast cancer rates in the area.
Lappin Presents at NIH Conflict of
Interest Workshop
When: September 2930, 2002
COPR member Debra Lappin was asked to present at an NIH workshop
on conflicts of interest. The workshop featured panel discussions
on the current climate and visions for the future as well
as institutional conflict of interest, case study presentations,
and comments from a responder panel. Ms. Lappin, as Chair
of the COPR Working Group that authored the COPR report Human
Research Protections in Clinical Trials: A Public Perspective,
provided a public perspective on conflicts of interest as
a member of the responder panel. Her comments focused on the
connection between conflicts of interest and human research
protections, the evolving role of the public as a partner
in the scientific research enterprise, the need for a "culture
of conscience" at the highest leadership levels, and
the importance of conflict of interest disclosures to the
public and Institutional Review Boards.
Mala Addresses Health Disparities at
NLM Board of Regents Meeting
When: September 10, 2002
COPR member Ted Mala, M.D., M.P.H., spoke about health disparities
affecting American Indians and Alaska Natives at the National
Library of Medicine (NLM) Board of Regents Meeting on September
10. As background to the NLM's Tribal Connections program,
which connects native tribes to health resources on the Internet,
Dr. Mala presented some startling statistics about the high
rate of death from common diseases among American Indians
and Alaska Natives. For example, among the 2.48 million Americans
who identify themselves in this native population, the death
rate from alcoholism is more than 600% that of the general
population and for tuberculosis it is more than 500%. Dr.
Mala described some of the ways in which the Association of
American Indian Physicians is currently working with the NLM
and other NIH Institutes and Centers to reduce these disparities,
and he emphasized the significance of traditional healing
methods to native populations and the importance of legitimizing
the study of such methods.
During this visit, Dr. Mala also met with representatives
from several Institutes in an effort to give presence to Native
American issues at NIH. These meetings included the National
Institute on Diabetes and Digestive and Kidney Diseases, National
Center for Complementary and Alternative Medicine, National
Institute on Aging, NEI, National Center on Minority Health
and Health Disparities, and National Institute on Mental Health.
Issues discussed at these meetings ranged from the sponsorship
of Native American students in biomedical careers to the activities
of epidemiological study centers for Indian health that are
funded by NIH.
Lappin Presents at Institute of Medicine
Committee Meeting on NIH Structure
When: July 30, 2002
COPR member Debra Lappin, J.D., was a presenter at the first
meeting of an Institute of Medicine committee charged with
studying the organizational structure of the NIH and making
recommendations to the U.S. Senate by June 2003. The goal
of this study is to determine the best possible approach to
the NIH organizational structure within the context of current
biomedical research science. Subsequently, Ms. Lappin was
asked to join the committee. As a member of this committee,
Ms. Lappin will be contributing to the development of this
15-month study and its final recommendations.
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