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Back to > About NIH > Get Involved at NIH > News Bulletins |
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NIH Public Liaison News Bulletin
- Spring 2000
The third meeting of the NIH Director’s Council of Public Representatives (COPR) will be held April 6 and 7 at the National Institutes of Health in Bethesda, MD. Presenters will include: Francis S. Collins, M.D., Ph.D., Director of the National Human Genome Research Institute (NHGRI), and Steven E. Hyman, M.D., Director of the National Institute of Mental Health (NIMH). Agenda topics will include: health disparities, human subjects protections, constituency outreach, and future directions for COPR. An agenda and information about video broadcasting of the meeting will be posted on the NIH Web site at http://getinvolved.nih.gov. The meeting will be held in NIH Building 31, Wing C, 6th Floor, Conference Room 6, from 8:30 a.m. to 4:00 p.m. on April 6, and 8:30 a.m. to 1:00 p.m. on April 7. The meeting is open to the public, with attendance limited to space availability. For additional information or for individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, contact Jennifer Gorman at 301-435-4448. COPR Members/Associates Assist NIH NIH Institutes, Centers, and OD Offices continue to invite members of COPR and the COPR Associates to participate directly in NIH programs. Examples of such involvement since the last COPR meeting, held in October, include: NIH’s National Library of Medicine sought assistance from the COPR Associates while preparing for the public launch of NIH’s new clinical trials database Web site: http://clinicaltrials.gov/. The COPR Associates were asked to tell NIH about their own experience searching for information about clinical trials, and to help NIH identify current or past participants of clinical trials willing to share their experiences with the public. The clinical trials database serves as a national repository for information about clinical trials for serious and life-threatening conditions. The registry collects clinical trial eligibility criteria, location information, and other facts in a single Web site. The COPR Associates were also invited to respond to 3 different calls for public comments on three draft policy proposals. These calls for public comment were on the following issues:
The genetic testing comments involved the Secretary's Advisory Committee on Genetic Testing (SACGT), which sought public comments on the adequacy of current oversight of genetic testing in the United States. The public comments on the health privacy rules involved a statutory deadline for Congress to enact legislation on this as of August 21, 1999. Absent the legislation, HHS developed a proposed rule, “The Standards for Privacy of Individually Identifiable Health Information,” which was distributed for public comment this February. The third call for public comments was on the "Draft NIH Guidelines for Research Involving Human Pluripotent Stem Cells" that was published in the Federal Register. The purpose of these draft guidelines was to recommend procedures to help ensure that NIH-funded research in this area is conducted in an ethical and legal manner. COPR member Melanie Dreher is among ten individuals appointed to a new NIH ad hoc advisory group addressing ways NIH might reduce regulatory burdens on the research community. Establishment of this advisory group was among the recommendations in the report NIH Initiative to Reduce Regulatory Burden: Identification of Issues and Potential Solutions, prepared last year under an NIH contract. Five COPR members have been invited to join five members of the Advisory Committee to the Director and NIH leadership for the agency’s annual Budget Retreat, June 15 and 16 in Bethesda, MD. The goal of the retreat is to identify research initiatives and areas of emphasis in preparation for the NIH FY2002 budget proposal. NIH Institute/Center Directors will present areas of research opportunity and special need as well as the investments they believe should be made in these areas, and will discuss new programs they want to start or expand. COPR members Debra Lappin, Rosemary Quigley, and Bob Roehr are currently participating in the Advisory Committee to the Director (ACD) Working Group on NIH Oversight of Clinical Gene Transfer Research. The NIH Director established this working group of the ACD to review the role of NIH in oversight of clinical gene transfer research. The group will examine the current NIH framework for oversight and public discussion of clinical gene transfer research to see if the process is appropriate, especially with regard to the respective roles of the Recombinant DNA Advisory Committee (RAC) and the NIH guidelines. This group will be consulting with outside experts and solicit public comment in the course of its work. The group met on March 9 and 10 and may meet again in April before they make their final recommendations to the Director and formally report to the ACD in June. NIAMS Funds Researcher-Patient Partnerships for Spinal Arthritis The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has awarded $4.5 million to establish the North American Spondylitis Consortium (NASC) to search for genes that determine susceptibility to ankylosing spondylitis (AS), a rare but painful inflammatory disease of the spine, primarily affecting men. The consortium is led by the University of Texas-Houston Health Science Center and includes nine other research centers and the Spondylitis Association of America. The Association will have a major role in recruiting patients and will maintain a central registry of information on families and sibling pairs with AS. For more information, see http://www.niams.nih.gov. Contact: Connie Raab, (301) 496-8188. NIDA Launches Public Campaign to Combat Club Drugs The National Institute on Drug Abuse (NIDA) has initiated a broad-based public campaign to inform and educate teens, young adults, parents, and community leaders about the dangers of so-called “club drugs” such as “Ecstasy” (methylenedioxymethamphetamine or MDMA), “Roofies” (flunitrazepam or Rohypnol), and GHB (gamma-hydroxybutyrate). In addition to NIDA, the Community Anti-Drug Coalitions of America, American Academy of Child and Adolescent Psychiatry, Join Together, and National Families in Action are participating in the coordinated effort to increase public awareness of the effects of club drugs. As part of the initiative, NIDA is increasing its funding for club drug research by 40 percent, to $54 million. The Institute has also developed a new Web site—http://www.clubdrugs.org—to disseminate science-based information about the drugs. Contact: Michelle Muth, (301) 594-6141. NIMH Launches National Outreach Partnership The National Institute of Mental Health (NIMH) recently launched a five-year communications initiative, the Constituency Outreach and Education Program, enlisting state organizations in a nationwide partnership to help close the gap between mental health research and services. The program is a key element in a broader effort by NIMH to deliver science-based information on mental health to the public and health professionals and increase access to research-based, effective treatments. NIMH named 18 Outreach Partners in 17 states and the District of Columbia, following a competitive selection process. Additional partners in the remaining states and Puerto Rico will be named later this year. Each Outreach Partner will conduct a mental health communications program for the public and health professionals through media relations, statewide coalition building, and outreach to minorities and special populations such as youth and the elderly. Partners will also sponsor educational efforts focusing on primary care physicians, nurses, employers, and other groups, and will promote recruitment of participants in NIMH-supported clinical studies. Several national organizations have a prominent role in the structure of the NIMH Constituency Outreach and Education Program. They include the National Alliance for the Mentally Ill, the National Association of State Mental Health Program Directors, the National Depressive and Manic-Depressive Association, and the National Mental Health Association. In addition, the program will include an Education Network of some 200 mental health, medical, and business groups, whose state or regional affiliates may engage in coalitions with the Outreach Partners. Contact: Marilyn Weeks or Lynn Cave, (301) 443-4536. NIDCR Director Dr. Harold Slavkin Announces Resignation Dr. Harold Slavkin, Director of the National Institute of Dental and Craniofacial Research (NIDCR) at the National Institutes of Health, recently announced that he will resign his position in July 2000 to return to his alma mater, the University of Southern California (USC). Dr. Slavkin joined the NIDCR in the summer of 1995 on an “extended leave of absence” from USC, where he served as director of the Center for Craniofacial Molecular Biology. Dr. Slavkin will return to USC to become the dean of its School of Dentistry. During Dr. Slavkin’s tenure as director of NIDCR, he spearheaded many advances, including the development of an Institute Strategic Plan. This plan analyzed the strengths and weaknesses of the institute and formulated three strategic initiatives to be realized over three years. Changing the institute’s name to NIDCR was one of the most visible outcomes for the plan. Under the plan, Dr. Slavkin continued to expand the Institute’s research areas, restructured its intramural and extramural programs to align with NIDCR’s major areas of scientific interest, and expanded the use of research centers. NIH Holds Public Events Around the Country NIH Institutes, Centers, and OD offices are increasing the number of NIH-sponsored lectures, workshops, town hall meetings, and other events held at NIH and around the country that invite involvement by the public. A partial list of upcoming and recent events is given below, with a contact for more information. You can also check the Institute/Center/Office's Web site for information at http://www.nih.gov/icd/. Recent Public Liaison Activities NIDCR Public
Advocates Forum The National Institute of Dental and Craniofacial Research (NIDCR) will hold a public advocates forum on April 3 in Washington, DC, at the St. James Hotel. The forum is designed to promote communication between patient advocates and the NIDCR and to obtain input from advocacy groups into Institute planning and research. Representatives of 20 advocacy groups are expected to attend the first forum. The forum is the result of a series of meetings initiated by the NIDCR to encourage wider public involvement in its programs. In 1998, the NIDCR invited 34 representatives of public advocacy groups to participate in a National Advisory Dental Research Council meeting. NIDCR staff later convened a public liaison planning roundtable at the headquarters of the National Foundation for Ectodermal Dysplasias in Illinois to help develop a blueprint for NIDCR’s outreach efforts to patient advocates. Chief among the group’s recommendations was that the Institute hold annual meetings with nonprofit advocacy groups. The NIDCR Public Advocates Forum on April 3 is the first of such meetings. Contact: Pat Sheridan, (301) 594-7557. NINDS
Epilepsy Conference The National Institute of Neurological Disorders and Stroke (NINDS) will host a conference, "Curing Epilepsy: Focus on the Future," on March 30 and 31, 2000, at the NIH. The conference is jointly sponsored by the NINDS, the American Epilepsy Society, the Epilepsy Foundation, Citizens United for Research in Epilepsy (CURE), and the National Association of Epilepsy Centers. The conference program will feature discussions on prevention of acquired epileptogenesis, ameliorating the effects of epilepsy genes, monitoring epileptogenesis, and the development of new therapies, and will include the participation of clinicians, scientists, government representatives, industry, health care organizations, and individuals who can speak on behalf of the larger community of people with epilepsy. For more information, view the conference Web site or call the "Curing Epilepsy" Conference Hotline toll-free 1-877-804-2377. NEI
Traveling Exhibits The National Eye Institute's (NEI) science museum traveling exhibit V I S I O N will be on display at the Old Capital Mall Science Museum Center, Iowa City, IA, March 24 - May 26. The display is sponsored by the University of Iowa’s Department of Ophthalmology and Visual Sciences. From June through September, the exhibit can be visited in San Diego, at the Reuben H. Fleet Science Center, a part of the University of California, San Diego. The university’s Shiley Eye Center is the sponsoring organization. The Department of Ophthalmology at the University of California, Davis, will host the exhibit at the Discovery Museum in Sacramento from October through January 2001. NEI will soon introduce a new Low Vision Traveling Exhibit to be displayed in shopping malls across the U.S. The exhibit will provide information about low vision, a visual impairment affecting some 14 million Americans and not correctable by standard glasses, contact lenses, medicine, or surgery. The exhibit includes five kiosks with an interactive multimedia touchscreen program and panels on causes and warning signs of low vision, and where to get help locally. A self-assessment is included to help people determine if they or someone they know has low vision. NEI is now evaluating results of the exhibit’s pilot test in Birmingham, AL, before announcing a national tour schedule. Contact: Jean Horrigan, (301) 496-5248. NCCAM
Town Meeting in Boston The National Center for Complementary and Alternative Medicine (NCCAM) will sponsor its first town meeting on Complementary and Alternative Medicine Research on March 15 at Boston (MA) Marriott Copley Place. Co-sponsoring the event is the Center for Alternative Medicine and Education of Beth Israel Deaconess Medical Center. National and local medical experts will speak on current developments in complementary and alternative medicine research at the local, regional and national levels. NCCAM Director Stephen E. Straus will provide an overview of NCCAM's mission, research, and accomplishments. Also scheduled are presentations by experts on the complementary and alternative medicine disciplines of acupuncture, massage therapy, and chiropractic. A press conference will be held immediately after the meeting. The event is free and open to the public. Contact: Anita Greene (NCCAM), (301) 496-1712; or Bill Schaller (BIDMC), (617) 975-6152. The National Institute of Environmental Health Sciences (NIEHS) is planning two more of its popular town meetings that enable citizens to discuss their environmental health concerns with local officials and NIEHS staff. Tentative schedule: Seattle, WA, in September or October, and Iowa City, IA, in November. The Seattle meeting would be held in conjunction with a seminar for area environmental health scientists. For exact times and agendas, watch the NIEHS home page at: http://www.niehs.nih.gov. Contact: Bill Grigg, (301) 402-3378. Other Public Liaison Activities NINR Event at the
Kennedy Center The National Institute of Nursing Research (NINR), working with a multidisciplinary Coalition for End-of Life Research and Care, launched a special event centered around the Pulitzer Prize-winning play Wit at the Kennedy Center in Washington, DC. The event took place on March 9, 2000. The play features a professor of English literature with stage four ovarian cancer, who is enrolled in a clinical trial. The care by the health care team, including ineffective pain control and failure to follow the patient's advance directive, highlights key public concerns about end-of-life care in a witty and powerful way. The purpose of the event was to use theater arts, speakers, and audience participation to increase awareness of the need for end-of-life research and positive change in end-of-life care. The audience included researchers, nurses, doctors, congressional and administration officials, and the public. At the pre-play reception in the Kennedy Center's Atrium Room, speakers focused on end-of-life issues. Following the play, a forum, "Beyond Wit —What are the Questions, What are the Answers?", took place with expert panelists, the actors, and the audience. Coalition members were: The National Institute of Nursing Research, the National Cancer Institute, the Office of Science Education, NIH, Americans for Better Care of the Dying, Hospice and Palliative Care of Metropolitan Washington, and Friends of the NINR. Contact: Linda Cook, (301) 496-0209. E-mail: lc59t@nih.gov. NIDDK
Meets with Constituent Groups The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) sponsored a meeting at NIH in January with representatives of voluntary and professional organizations interested in kidney diseases and urologic disorders. The meeting featured progress reports from the Institute’s National Kidney and Urologic Diseases Clearinghouse. Attendees were asked for their comments and advice on NIDDK health information dissemination activities, including redesign of the NIDDK home page, Clearinghouse publications and products, and Internet initiatives by the National Library of Medicine and National Cancer Institute. Representatives of national voluntary and professional groups reported on their initiatives and plans for future cross-linkages were forged. Contact: Kathy Kranzfelder, (301) 496-3583. E-mail: Kranzfelder@extra.niddk.nih.gov. NASA Astronauts
Meet Public at NIH Astronauts from the NASA ITS-95 Space Shuttle Discovery came to NIH in January to discuss science with more than 800 children and adults from nearby neighborhoods. The children included patients from the NIH Clinical Center and the Children’s Inn. After watching “home movies” of the crew’s nine-day mission, the children had a chance to ask the astronauts about the space shuttle, the kinds of scientific experiments conducted during the mission, and what it’s like to go into space. The visiting astronauts were: Pilot Steve Lindsey, Lt. Col., USAF; Mission Specialist Stephen K. Robinson, Ph.D.; Payload Specialist Chiaki Mukai, M.D., Ph.D.; and Payload Specialist John J. Glenn, Jr., former U.S. Senator. This community event was sponsored by NIH’s National Institute on Aging (NIA) and National Institute on Deafness and Other Communication Disorders, and by the National Aeronautics and Space Administration. For more information, visit the NIA Web site at: http://nia.nih.gov. Contact: Suzanne Lewis, (301) 496-1752. NIDA
6th Annual Constituent Conference More than 60 individuals representing 48 organizations concerned with drug abuse and addiction attended NIDA’s Sixth Annual Constituent Conference Dec. 5-6 in Chantilly, VA. The theme of the meeting was “Putting Research to Actual Use.” These annual conferences help NIDA establish its research agenda. At the conferences, NIDA presents its latest research findings, program accomplishments, and initiatives, and constituent leaders express their concerns. Constituent recommendations that emerge from the conferences are essential to NIDA’s efforts to effectively educate the public and policymakers about drug abuse and addiction. NIDA prepares an annual “report card” that illustrates how the Institute has acted in response to the constituents’ recommendations from the previous year. The constituent groups also compile their own report cards, summarizing their activities over the past year. Contact: Jane Holland, (301) 594-6188.
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