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COPR Member Ahmed Interviews with Local National Public Radio Affiliate
When: May 30, 2007
Location: Milwaukee, Wisconsin
Syed Ahmed, M.D., M.P.H., Dr.P.H., interviewed with WUWM Lake Effect (89.7 FM), his local National Public Radio station in Milwaukee, Wisconsin. Dr. Ahmed discussed his role as a COPR member and his role as the Director of the Center for Healthy Communities in Wisconsin.
COPR Member Crew Assists with the Lupus Genetics Study
When: May 18, 2007
Location: Oklahoma
Linda Crew, R.N., M.B.A., was asked to provide information for the Lupus Genetics Study. She provided information about her personal experience with lupus and her professional experience working with the Hispanic/Latino communities. Ms. Crew discussed ways to conduct outreach to the Hispanic/Latino community about lupus. The Lupus Genetics Study is sponsored by the Oklahoma Medical Research Foundation.
COPR Member Ahmed Speaks to NLM’s Board of Regents Subcommittee on Outreach and Public Liaison
When: May 2007
Location: National Institutes of Health, Bethesda, Maryland
Syed Ahmed, M.D., M.P.H., Dr.P.H., participated in the National Library of Medicine’s Board of Regents Subcommittee on Outreach and Public Liaison, which is seeking new approaches to outreach and information dissemination with the public.
COPR Member Lindquist Participates on the NIH Office of Science Policy Working Group on Participant and Data Protection for the Genetic Association Information Network (GAIN) and Genome-wide Association Studies (GWAS)
When: October 2007
Location: National Institutes of Health, Bethesda, Maryland
COPR Member Cynthia Lindquist, Ph.D., M.P.A., is participating on the NIH Office of Science Policy’s Working Group on Participant and Data Protection for the Genetic Association Information Network (GAIN) and Genome-wide Association Studies (GWAS), which falls under the NIH Director's Advisory Committee.
Information on GWAS was presented at the November 2006 COPR meeting by Dr. Susan Shurin, Deputy Director of the National Heart, Lung, and Blood Institute. At the October 2007 COPR meeting, the Director's Update included a statement about NIH's receipt of over 200 public comments on the GWAS policy. Dr. Kington, who participated for Dr. Zerhouni, stated that the Director’s Council would be forming a working group to provide independent advise on participant and data protections. The Working Group will have a 2-hour teleconference in January 2008.
COPR's Mala Advises NLM on Native American Outreach Coordination
When: August 12–December 31, 2004
Location: Bethesda, Maryland
COPR Member Ted Mala, M.D., M.P.H., advised the National Library of Medicine (NLM) in the coordination of their Native American outreach program. NLM has sponsored a variety of health information outreach activities to Native American communities. The sponsorship of these outreach activities is motivated in part by the understanding that American Indian and Alaska Native communities experience significant health disparities. NLM's varied effort, both directly and through the National Network of Libraries of Medicine, has focused on improving tribal awareness of, access to, and use of Web-based health information, including but not limited to NLM's health information resources. The first outreach program for the reservations took place in South Dakota in late August 2003.
COPR Members Participate in NIH Roadmap Planning Meetings
When: July–September 2006
Location: National Institutes of Health, Bethesda, Maryland
Ten COPR members participated in NIH Roadmap for Medical Research consultation meetings held between July and September. The meetings resulted in a request for information (RFI) to the public to provide ideas for improving and accelerating biomedical research. Participants included Syed M. Ahmed, M.D., Dr.P.H., Nicole Johnson, M.A., M.P.H., Ruth Browne, Sc.D., M.P.H., M.P.P., Barbara Butler, Wendy Chaite, Esq., Christina Clarke, M.A., M.B.A., Valda Boyd Ford, M.P.H., Cynthia Lindquist, Ph.D., M.P.A., Marjorie Mau, M.D., M.S., and James H. Wendorf.
Several COPR Members Join the NIH Plain Language Evaluation and Awards Subcommittee
When: August 2003–2007
Location: National Institutes of Health, 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 Members Participate in an NCRR Workshop on Fostering Collaborative Community-Based Clinical and Translational Research
When: May 15, 2007
Location: National Institutes of Health, Bethesda, Maryland
Elmer Freeman, M.P.H., facilitated a session at the National Center for Research Resources (NCRR) Workshop on Fostering Collaborative Community-Based Clinical and Translational Research. COPR Members Marjorie Mau, M.D., M.S., and Naomi Cottoms also attended the workshop. NCRR convened the one-day workshop to focus on key barriers to and enablers of effective academic-community partnerships for clinical and translational research. The workshop was held in conjunction with the Agency for Healthcare Research and Quality (AHRQ) Practice-Based Research Networks 2007 National Research Conference. The goal of the workshop was to identify strategies and best practices for conducting collaborative community-based research, particularly in minority communities and other medically underserved communities where health disparities persist.
NCRR conducted a follow-on workshop in Los Angeles, California, on September 14, 2007. The products of these workshops will include specific recommendations for NCRR initiatives to enhance clinical and translational research in underserved communities. The workshops will also encourage efforts to strengthen existing partnerships and build new partnerships among government agencies, academic organizations, and private-sector organizations that are working to improve health care and community health outcomes.
COPR Members Participate on NIH Leadership Search Committees
When: Ongoing
Location: National Institutes of Health, Bethesda, Maryland
COPR members have participated on NIH Leadership Search Committees to aid in the process of selecting new leadership staff for NIH Institutes and Centers and NIH Director’s Offices. Participants have included Frances J. Dunston, M.D., M.P.H., Rafael Gonzalez-Amezcua, M.D., Marjorie Mau, M.D., M.S., and Ellen V. Sigal, Ph.D.
COPR Members Participate on NIH Leadership Review Panels
When: Ongoing
Location: National Institutes of Health, Bethesda, Maryland
COPR members have participated on NIH Leadership Review Panels to assess the Office of the Director’s performance in the areas of scientific leadership, administration, participation and interaction with the scientific community, and representation with advocacy. Participants have included Ruth Browne, Sc.D., M.P.H., M.P.P., Barbara Butler, Frances J. Dunston, M.D., M.P.H., Ellen Grant, and Debra S. Hall, Ph.D.
COPR Member Crew Speaks at the Greer Chamber of Commerce
When: August 24, 2007
Location: Spartanburg, South Carolina
Linda Crew, R.N., M.B.A., presented “How NIH advances help address health care costs,” to more than 100 local business leaders, including major hospitals in the area, from the Greer Chamber of Commerce. The meeting was sponsored by the Spartanburg Regional Health Care System. In her presentation, Ms. Crew emphasized Dr. Zerhouni’s four Ps, as a way to preempt chronic diseases and reduce long-term health care costs. The four Ps are described as the future paradigm of medicine: predictive, personalized, preemptive, and participatory.
COPR Member Furlong Presents to Nursing Students
When: October 2007
Location: Omaha, Nebraska
Beth Furlong, R.N., Ph.D., J.D., presented the Overview of the National Institutes of Health slide presentation and discussed her role as a COPR member to nursing students at Creighton University School of Nursing in Omaha, Nebraska.
COPR Member Margo Produces Interview with Dr. Zerhouni
When: October 2007
Location: National Institutes of Health, Bethesda, Maryland
Matthew Margo, LL.M., produced a 30-minute CBS Cares Radio interview with Dr. Zerhouni and the internationally recognized reporter Charles Osgood in July. The interview is available online at www.wcbs880.com/topic/play_window.php?audioType=Episode&audioId=1032057.
COPR Member Palermo Presents Comments at the NIH Peer Review Consultation Meeting
When: October 2007
Location: New York, New York
Ann-Gel Palermo, M.P.H., presented comments on strategies for facilitating community partnership engagement in research among principal investigators, applicants, and peer reviewers with the goal of increasing the rigor, relevancy, and impact of NIH-funded research at the NIH Peer Review Regional Consultation Meeting in New York City on October 8.
COPR Member Presents to NIH Health Communicators, Program Staff, and Others
When: November 1, 2006
Location: National Institutes of Health, Bethesda, Maryland
Cynthia Lindquist, Ph.D. helped to launch the NIH American Indian and Alaska Native Health Communications Workgroup seminar series by presenting “Cultural Competency Strategies for Indigenous Health…A Dakota Perspective.” The seminar also supported NIH activities celebrating Native American Heritage Month.
COPR Member Gonzalez-Amezcua Participates in Radio Unica Health Talk Show
When: September 27, 2003, 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 Muñoz Participates in Radio Unica Health Talk Show
When: October 4, 2003, 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.
Sadwin Serves as COPR Liaison to the NIH Advisory Committee to the Director (ACD)
When: June 20, 2003–March 31, 2004
Location: NIH Campus
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 Sigal Receives Exceptional Volunteer Advocate Award
When: March 16, 2004
Location: Washington, DC
COPR Member Ellen V. Sigal, Ph.D., was honored with Research!America's 2004 Award for Exceptional Contributions as a Volunteer Advocate. Dr. Sigal, who is founder and chairperson of Friends of Cancer Research (FCR), is recognized for bringing both grassroots and top-down influence to bear on the nation's policy for accelerated research funding.
Dr. Sigal, who is also President of CCR's Creative Community Task Force for Cancer Research, has received other awards in the past for her cancer advocacy efforts, including the 1998 American Association for Cancer Research National Leadership Award, the 1999 Sidney Kimmel Cancer Center National Leadership Award, and the 2002 American Society of Clinical Oncology Special Recognition Award.
COPR's Sadwin is Selected for NIH Panel on Conflict of Interest Policies
When: February 19–May 6, 2004
Location: NIH Campus
On February 19, 2004, COPR member Lawrence Sadwin was appointed to the NIH Blue Ribbon Panel on Conflict of Interest Policies. Dr. Elias Zerhouni, M.D., established the panel to examine the guidelines governing consulting activities of NIH scientists. The panel is a working group of the NIH's Advisory Committee to the Director and is co-chaired by Bruce Alberts, Ph.D., President of the National Academy of Sciences, and Norman R. Augustine, Chairman of the Executive Committee of the Lockheed Martin Corporation. Seven other distinguished experts are also on the 10-member panel. (See http://www.nih.gov/news/pr/jan2004/od-22.htm and http://www.nih.gov/news/pr/feb2004/od-19.htm)
NIH Director Zerhouni said, "I look forward to the Panel's recommendations on how best to ensure complete transparency, full disclosure, independent review, and continuous monitoring of activities." The panel's first meeting was March 1 - 2. The panel also presented a report to Dr. Zerhouni in May 2004. (See http://www.nih.gov/news/pr/feb2004/od-25.htm.)
COPR's Tetenbaum Serves on NIAAA Advisory Panel for Policy Outreach Contract
When: 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 Member Butler Attends the Director's Consumer Liaison Group Meeting
When: September 24, 2003
Location: 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 Member Butler Talks to Psoriasis Groups About COPR
When: February 4–10, 2004
Location: Washington, DC
COPR Member Barbara Butler gave three presentations about the COPR and its activities while in Washington DC to attend the American Academy of Dermatology’s annual meeting February 4–10. She spoke to the National Psoriasis Foundation Medical Advisory Board and the Psoriasis Expert Resource Group, which want to communicate information about the COPR to their patients and relay to COPR their experiences with the NIH’s research priority setting process. Ms. Butler also made a presentation to the Patient Advocate for Skin Disease Research Group, which comprises patient advocates. In each instance, Ms. Butler sought to learn about the group’s experiences in dealing with the NIH.
COPR's Sigal Receives Exceptional Volunteer Advocate Award
When: March 16, 2004
Location: Washington, DC
COPR Member Ellen V. Sigal, Ph.D., was honored with Research!America's 2004 Award for Exceptional Contributions as a Volunteer Advocate. Dr. Sigal, who is founder and chairperson of Friends of Cancer Research (FCR), is recognized for bringing both grassroots and top-down influence to bear on the nation's policy for accelerated research funding.
Dr. Sigal, who is also President of CCR's Creative Community Task Force for Cancer Research, has received other awards in the past for her cancer advocacy efforts, including the 1998 American Association for Cancer Research National Leadership Award, the 1999 Sidney Kimmel Cancer Center National Leadership Award, and the 2002 American Society of Clinical Oncology Special Recognition Award.
COPR Member Tamura Participates in NCCAM's Washington DC Stakeholder Forum
When: March 22, 2004
Location: Natcher Conference Center, NIH, Bethesda, MD
The National Center for Complementary and Alternative Medicine (NCCAM) organized Stakeholder Forums so the public could have input into its 5-year strategic planning process, and COPR Member Leonard Tamura, Ph.D., helped to support these efforts for the Forum in Washington, DC. He also moderated at the event.
NCCAM's Stakeholder Forums are open to anyone who wants to voice their opinions regarding NCCAM's future directions for research, training, outreach, and integration in complementary and alternative medicine. The listening panel comprises NCCAM senior staff and National Advisory Council members. NCCAM celebrated its fifth anniversary and launched its second 5-year strategic planning effort. To learn more about the Forums, please visit http://nccam.nih.gov/about/plans/stakeholder/.
Sadwin Serves as COPR Liaison to the NIH Advisory Committee to the Director (ACD)
When: June 20, 2003–March 31, 2004
Location: National Institutes of Health, 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 Member Mala Plans and Moderates NCCAM's Seattle Stakeholder Forum
When: April 19, 2004
Location: Westin Seattle, 1900 Fifth Avenue, Seattle, WA
The National Center for Complementary and Alternative Medicine (NCCAM) held Stakeholder Forums so the public could have input into its 5-year strategic planning process, and COPR Member Ted Mala, M.D., M.P.H., helped to plan the Forum in Seattle. Mala, who works in Alaska as Director of Tribal Relations for the Southcentral Foundation, also moderated at the event.
The Forums are open to anyone who wants to voice their opinions regarding NCCAM's future directions for research, training, outreach, and integration in complementary and alternative medicine. The listening panel will comprise NCCAM senior staff and National Advisory Council members. Anyone who cannot give remarks at the Forums may submit written testimony online. NCCAM recently celebrated its fifth anniversary and launched its second 5-year strategic planning effort. To learn more about the Forums, please visit http://nccam.nih.gov/about/plans/stakeholder/.
COPR's Sadwin Is Selected for NIH Panel on Conflict of Interest Policies
When: February 19–May 6, 2004
Location: National Institutes of Health, Bethesda, Maryland
On February 19, 2004, COPR member Lawrence Sadwin was appointed to the NIH Blue Ribbon Panel on Conflict of Interest Policies. Dr. Elias Zerhouni, M.D., established the panel to examine the guidelines governing consulting activities of NIH scientists. The panel is a working group of the NIH's Advisory Committee to the Director and is co-chaired by Bruce Alberts, Ph.D., President of the National Academy of Sciences, and Norman R. Augustine, Chairman of the Executive Committee of the Lockheed Martin Corporation. Seven other distinguished experts are also on the 10-member panel. (See http://www.nih.gov/news/pr/jan2004/od-22.htm and http://www.nih.gov/news/pr/feb2004/od-19.htm)
NIH Director Zerhouni said, "I look forward to the Panel's recommendations on how best to ensure complete transparency, full disclosure, independent review, and continuous monitoring of activities." The panel's first meeting was March 1 - 2. The panel also presented a report to Dr. Zerhouni in May 2004. (See http://www.nih.gov/news/pr/feb2004/od-25.htm.)
COPR Member Mala Visits NIAMS Health Center
When: October 15, 2003
Location: NIAMS Community Health Center, 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's Butler Attends Strategic Planning Forum for NCRR
When: 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: - Identify important research trends relevant to NCRR’s mission
- What implications do these have for NCRR
- How should NCRR meet these challenges?
COPR Alumni, Lappin, Member of NRC-IOM Committee on NIH Organizational Structure
When: July 30, 2003
Location: 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.
COPR's Butler Serves on Panel at Conference on Lupus
When: 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.
Mala Brings Native American Students to NIH
When: June 20–26, 2003
Location: NIH Campus
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.
COPR's Butler Talks to National Voluntary Group
When: May 5, 2003
Location: 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.
Sadwin Participates in NIH Director's Clinical Research Roadmap Work Group Meeting
When: Spring 2003
Location: 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
When: January 28, 2003
Location: NIH Campus
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
When: January 2003
Location: NIH campus, 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.
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.
Tetenbaum Provides Alcohol Prevention Toolkit to Illinois Health Education Center
When: January 2003
Location: 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.
Hinton Presents to Coalition of HIV/AIDS Service Providers
When: December 13, 2002
Location: Kansas City, Missouri
Kimberley Hinton provided an overview of the COPR and the NIH to the Service Providers Network, a coalition of HIV/AIDS service providers based in Kansas City, Missouri. The coalition members, who were from Kansas City and throughout the state of Missouri, were particularly interested in learning more about NIH funding opportunities. The Service Providers Network meets monthly and is coordinated by the AIDS Council of Greater Kansas City.
Mala Helps Author Article on Internet Outreach Project at Indian Reservations
When: 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.
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.
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