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 23–24, 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 7–8, 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 29–30, 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.