COPR Member Mala Visits NIAMS Health Center
October 15, 2003 / Washington, DC
COPR Member Ted Mala, M.D., organized a visit of health advocates for Native Americans and Alaska Natives to the NIAMS Community Health Center in the Cardozo neighborhood of Washington, DC, to learn how one NIH Institute is partnering with a community to learn more about health disparities. The NIAMS Center serves the local Hispanic/Latino and African American communities, two groups disproportionately affected by some rheumatic diseases. The visiting group comprised representatives from Alaska’s Southcentral Foundation, the group for which Mala is Director of Tribal Relations and Traditional Healing, and the National Indian Women’s Health Resource Center, based in Oklahoma.
The visit, on October 15, 2003, gave the delegation a chance to see in operation the NIH’s first community-based clinic devoted to rheumatic diseases, as well as to learn more about the natural history research study being conducted there. Likewise, the visit gave NIAMS staff an opportunity to learn from the best practices of the Southcentral Foundation, which provides health care to more than 25,000 Alaska Natives and has the unique challenge of improving the health and well-being of native families while enhancing their culture.
COPR Member Muñoz Participates in Radio Unica Health Talk Show
October 4, 2003 and October 11, 2003
COPR Member Rod Muñoz helped the NIH Hispanic communications program by participating as a guest speaker on health talk shows broadcast by Radio Unica, a leading Spanish-language radio network. His comments were broadcast on October 4 from Fresno, California, and on October 11 from San Francisco. In Fresno, an area with a large migrant population, he talked about overcoming health disparities among Hispanics. In San Francisco, he discussed depression in Latinas.
The hour-long talk shows on Hispanic health issues were part of a larger program of Hispanic health fairs that Radio Unica held in 12 U.S. cities between August and November. A talk show was broadcast the day before and a week after each fair. NIH provided guest speakers for each show, with the assistance of Spanish-speaking NIH staff, grantees, and advisory group members. Other NIH-affiliated guest speakers have discussed diabetes, stroke, early detection of hearing loss in infants, arthritis, Alzheimer’s disease, childhood obesity, and participation in clinical trials.
NIH was the first federal agency to support the pilot program of Hispanic health fairs in 2001, and every year the NIH information booth has been the largest and among the most popular with visitors. Last year, more than 23,000 people came to the fairs. The health fairs are held in the parking lots of WalMart stores in cities with large Hispanic populations. For the 2003 schedule of fairs, please see the NIH Public Bulletin.
COPR Member Gonzalez-Amezcua Participates in Radio Unica Health Talk Show
September 27, 2003 and October 4, 2003
COPR Member Rafael Gonzalez-Amezcua helped the NIH Hispanic communications program by participating as a guest speaker on health talk shows broadcast by Radio Unica, a leading Spanish-language radio network. His comments were broadcast from Fresno on September 27 and from San Francisco on October 4. In Fresno, an area with a large migrant population, he talked about obesity in Hispanic children, with a focus on the 5-A-Day nutrition program of the National Cancer Institute. In San Francisco he talked about heart disease.
The hour-long talk shows on Hispanic health issues were part of a larger program of Hispanic health fairs that Radio Unica is holding in 12 U.S. cities between August and November. A talk show was broadcast the day before and a week after each fair. NIH provided guest speakers for each show, with the assistance of Spanish-speaking NIH staff, grantees, and advisers. NIH-affiliated guest speakers have discussed diabetes, stroke, early detection of hearing loss in infants, arthritis, Alzheimer’s disease, and participation in clinical trials.
As part of its outreach to Hispanic communities, NIH was the first federal agency to support the pilot program of health fairs in 2001, and every year the NIH information booth has been the largest and among the most popular with visitors. Last year, more than 23,000 people came to the fairs. The health fairs are held in the parking lots of WalMart stores in cities with large Hispanic populations. For the 2003 schedule of fairs, please see the NIH Public Bulletin.
COPR Member Butler Attends the Director's Consumer Liaison Group Meeting
September 24, 2003 | Rockville, Maryland
COPR Member Barbara Butler attended a meeting of the National Cancer Institute’s (NCI) Director’s Consumer Liaison Group (DCLG) in September. The DCLG is a chartered federal advisory committee that makes recommendations to the NCI director from the consumer advocate perspective on a wide variety of issues, programs, and research priorities. After attending the meeting, Ms. Butler reported back to COPR members on the roles and priorities of other public members and leadership groups at NIH.
COPR's Butler Attends Strategic Planning Forum for NCRR
September 10–11, 2003
COPR Member Barbara Butler attended a strategic planning forum called Choices and Challenges: Future Directions for NCRR, in which distinguished members of the biomedical research community generated recommendations for NCRR’s Strategic Plan for 2004–2008. Ms. Butler provided public input at the planning forum and noted that, “By including a representative, NCRR showed their commitment to including input from their various constituencies.” The meeting discussions focused on:
COPR's Butler Serves on Panel at Conference on Lupus
September 5–6, 2003
COPR Member Barbara Butler served on a panel at a conference called Lupus Today: Research Into Action in September. The meeting focused on the current status and future directions of research and treatment for systemic lupus erythematosus. Ms. Butler took part in a panel discussion on "What It Means to Be a Patient with Lupus Today." The organizers of this conference aimed to inform, energize, and share the latest developments about the future of lupus research with patients and their families, physicians, health care workers, scientists, and organizations that are involved in lupus research and outreach. The conference will be hosted jointly by the Office of Research on Women's Health at the U.S. Department of Health and Human Services' (DHHS) National Institutes of Health (NIH), the Office on Women's Health at the DHHS, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the NIH, DHHS. Eleven DHHS and NIH components and eight voluntary organizations co-sponsored the meeting.
Several COPR Members Join the NIH Plain Language Evaluation and Awards Subcommittee
August 2003–2007 / Bethesda, Maryland
COPR members participate as reviewers and judges for consumer-oriented products produced by NIH communications offices and entered into the NIH Plain Language Awards Program. Early in its efforts, the NIH formed a Plain Language Coordinating Committee (PLCC). The PLCC plays a key role in encouraging the use of plain language by developing and offering training, providing plain language resources, and sponsoring an annual awards program. Previous and current participants include James Armstrong, Ruth Browne, Sc.D., M.P.H., M.P.P., Barbara Butler, Linda Crew, R.N., M.B.A., Frances Dunston, M.D., M.P.H., Rafael Gonzalez-Amezcua, M.D., Ellen Grant, Debra S. Hall, Ph.D., Nicole Johnson, M.A., M.P.H., Nicolas Linares-Orama, Ph.D., Ted Mala, M.D., M.P.H., Michael Manganiello, M.P.A., Marjorie Mau, M.D., M.S., Rodrigo A. Muñoz, M.D., Dawna Torres Mughal, Ph.D., Ann-Gel Palermo, M.P.H., Leonard Tamura, Ph.D., Zelda Tetenbaum, and Donald Tykeson.
COPR's Tetenbaum Serves on NIAAA Advisory Panel for Policy Outreach Contract
August 1, 2003–December 31, 2004
COPR Member Zelda Tetenbaum, M.Sc., served as a member of the advisory panel for the National Institute on Alcoholism and Alcohol Abuse's (NIAAA) Policy Outreach Contract by NIAAA Director Ting-Kai Li, M.D. The NIAAA is responsible for designing and implementing a broad range of outreach activities to advance the field of alcohol abuse and alcoholism through linkages among the research, prevention, and treatment components of the field. Seven individuals with different backgrounds, expertise, and experience—in areas such as education, policy, communications, and translating research findings into useful information for non-scientists—were chosen for the panel. Panel members help guide the Institute in its planning and decision process regarding the work conducted under the Policy Outreach Contract. This contract provided support to NIAAA's outreach and policy activities that focus on fostering collaborations and "research to practice" efforts.
COPR Alumni, Lappin, Member of NRC-IOM Committee on NIH Organizational Structure
July 30, 2003 / Washington, DC
COPR Alumni Debra Lappin, J.D., served as a member of the National Research Council (NRC) and the Institute of Medicine (IOM) of the National Academies Committee that reviewed the Organizational and Management Structure of the NIH. This Committee assisted in the study of the organizational structure of the NIH and made broad-based recommendations for the restructuring of the NIH given the context of 21st century biomedical research science. As a COPR member, Ms. Lappin was initially asked to present testimony during the first meeting of the NRC/IOM Committee and then was later asked to join the committee to participate in the committee's year long efforts to produce recommendations. The newly released report is formally titled Enhancing the Vitality of the National Institutes of Health: Organizational Change to Meet New Challenges. The COPR submitted recommendations to the NIH Director that were forwarded to this committee last December 2002. To view the COPR submission to the NRC/IOM committee, please visit http://copr.nih.gov/reports/COPRIOMResponse2004.asp. To view the official National Academies press release on the NRC/IOM report, please visit their Web site.
Mala Brings Native American Students to NIH
June 20–26, 2003 / Bethesda, Maryland
COPR Member Ted Mala, M.D., M.P.H., accompanied 65 outstanding Native American high school students to the NIH Campus through the 6th Annual National Native American Youth Initiative in the Health, Biomedical Research, and Policy Development Program. The program is designed for high school students aged 16–18 years who are interested in a career in the health professions and/or biomedical research. The week-long program included the following: A broad perspective of the health sciences and biomedical research; an introduction to national health and scientific institutions; a national network of Native American health professionals, scientists, role models and mentors; and a variety of workshops, field trips, and tutorials.
Sadwin Serves as COPR Liaison to the NIH Advisory Committee to the Director (ACD)
June 20, 2003 –March 31, 2004 / Bethesda, Maryland
COPR Member Larry Sadwin is serving as the COPR Liaison to the NIH Advisory Committee to the Director (ACD) meetings. Mr. Sadwin and COPR members Debra Hall and Bob Roehr were invited to present a summary of the COPR's goals and activities at the December 2002 ACD meeting. During the December ACD meeting, it was suggested that one COPR member be appointed to serve as the regular liaison between the two NIH Director's Councils to help encourage regular updates and communications between the two groups. At the June 2003 ACD meeting, the NIH Director asked Mr. Sadwin to serve as the official COPR liaison to the ACD for the remainder of his COPR term. Mr. Sadwin attended the December 2003 ACD meeting in his new capacity as the official COPR liaison to the ACD.
COPR's Butler Talks to National Voluntary Group
May 5, 2003 / Washington, DC
COPR Member Barbara Butler provided an overview of the NIH Director's Council and its mission to a group who were in Washington, DC, to attend a gala benefit for the Lupus Foundation of America. Ms. Butler attended the opening session and showed the group the video The New NIH, explained the COPR and its mission, and distributed copies of the NIH Mission Statement. As a COPR member, Ms. Butler gathered information from the attendees about which formats and channels of communications worked best for them and she solicited feedback on how the NIH might enhance outreach and communications with these groups and the various communities they serve.
Mala Attends NIDDK Network Minority Research Investigators Workshop
When: May 1–2, 2003
Location: NIH Campus
COPR Member Ted Mala, M.D., M.P.H., attended the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Network of Minority Research Investigators Workshop at the NIH. The dual purposes of the workshop were to help participants attain their academic pursuits and to close the health gap among racial and ethnic minorities. The workshop's goals were to increase the success of junior investigators through mentoring, to provide senior investigators the opportunity to meet junior ones, and to develop long-term opportunities for minority scientists.
Sadwin Participates in NIH Director's Clinical Research Roadmap Work Group Meeting
Spring 2003 / Washington, DC
COPR Member Larry Sadwin participated in the NIH Director's Clinical Research Roadmap work group meeting this past spring 2003. The goals of the meeting were to identify and clarify roadblocks currently facing clinical research and researchers and, most importantly, to develop specific recommendations regarding the re-engineering of the clinical research enterprise. Meeting participants were asked to develop possible solutions taking specific economic and environmental factors into consideration. In addition to his meeting participation, Mr. Sadwin provided a report on his experience to fellow COPR members where he offered the following observations: "the experience and intellect of the participants that the NIH is able to attract is most impressive; equally impressive was their willingness to engage in animated debate, discussion, and hard work. This meeting was intended to be part of an ongoing discussion and should be considered as a work in progress. And finally on a more personal note, I was honored to be able to attend and was grateful that as a COPR member, I was given the opportunity to participate and express the public's view on these issues."
Hall Attends Public Meeting of National Institute of Nursing Research
January 28, 2003 / Bethesda, Maryland
Debra Hall attended a meeting of the National Institute on Nursing Research (NINR) Advisory Council for Nursing Research. By attending the meeting, Ms. Hall was able to communicate with advisory council members about the COPR and its recent activities. She provided a detailed report to the full COPR on her observations and impressions of the NINR meeting she attended.
COPR Members Present Overviews of Council to NIH Advisory Groups
January 2003 / Bethesda, Maryland
COPR members spoke at recent meetings of the National Cancer Institute (NCI) Director's Consumer Liaison Group (DCLG) and the NIH Advisory Council to the Director (ACD) about the role of COPR, from its history to current priorities. Debra Lappin and Nancye Buelow spoke at the January meeting of the DCLG, a federally chartered advisory committee of 15 cancer advocates that advises and makes recommendations to the Director of the NCI. COPR Members Debra Hall, Larry Sadwin, and Bob Roehr presented at the December meeting of the Advisory Council to the Director (ACD), which advises the NIH Director on NIH programs and policies, especially those related to scientific opportunities and emerging trends in the research community.
Tetenbaum Provides Alcohol Prevention Toolkit to Illinois Health Education Center
January 2003 / Hinsdale, Illinois
Zelda Tetenbaum worked with the National Institute on Alcoholism and Alcohol Abuse (NIAAA) to distribute information kits on college drinking prevention to the Robert Crown Center for Health Education, a teaching-learning center where young people learn about the human body, its functions, and their responsibilities to it. The kit contains a series of publications released by the Task Force on College Drinking that are designed to support researchers, college presidents, parents, students, and community leaders as they come together to address the problem of college drinking. Other institutions, organizations, and members of the public can learn more about the kit by going to www.collegedrinkingprevention.gov/Order/default.aspx#1.
Mala Helps Author Article on Internet Outreach Project at Indian Reservations
January 2003
Ted Mala, M.D., M.P.H., was one of eight authors of a paper that reviews results of the National Library of Medicine's (NLM's) Tribal Connections Project, which emphasized the establishment or strengthening of Internet connections at select Indian reservations and Alaska Native villages as well as related needs assessment and training. The paper, which included several authors from NLM, was published in the January 2003 edition of the Journal of the Medical Library Association. Dr. Mala became involved in the NLM project while serving on its Native American Tribal Outreach Advisory Board. He advised NLM on how to conduct Tribal Connections with tribes in Alaska.