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NIH Public Liaison News Bulletin - June 2001
Fall 2001 COPR Meeting Announcement The sixth meeting of the NIH Director's Council of Public Representatives (COPR) will be held on Tuesday, October 23, 2001, on the NIH campus in Bethesda, MD. Please mark your calendar and watch for more details on the NIH Public Liaison and COPR Web site at http://forthepublic.nih.gov.
Spring 2001 COPR Meeting Summary The fifth meeting of the NIH Director's Council of Public Representatives (COPR) was held May 1 on the NIH campus in Bethesda, MD. Acting Director of NIH Ruth Kirschstein, M.D., welcomed several ad hoc participants and updated COPR on the pending negotiations over the NIH appropriations bill in Congress. Several COPR members reported on a variety of group and individual COPR activities. Some of the activities included 1) presentations provided by COPR members to various groups at Institute meetings, 2) organizing local outreach efforts to increase the understanding of the NIH mission, and 3) working with NIH information technology staff to make NIH Web sites more accessible to the visually impaired. Presenters at this meeting included Patricia Grady, Ph.D., R.N., Director of the National Institute of Nursing Research; Allen Spiegel, M.D., Director of the National Institute of Diabetes and Digestive and Kidney Diseases; and Duane Alexander, M.D., Director of the National Institute of Child Health and Human Development. The afternoon discussion centered on the activities and goals of the COPR Human Research Protections Working Group (HRPWG). The HRPWG discussion focused on possible ways that COPR might represent and communicate the public's perspective on some of the major issues related to the protection of human subjects in research.
COPR Members Activities and Highlights COPR Member Helps NIDCD to Develop Materials for Hispanic Workers and Families COPR member Isaac Montoya, Ph.D., is working with and advising the National Institute on Deafness and Other Communication Disorders (NIDCD) on WISE EARS!, the Institute's national public education campaign to prevent completely preventable noise-induced hearing loss. Dr. Montoya is helping NIDCD to develop materials for Hispanic/Latino/Latina workers and families. Much of the outreach for this program is focused in vocational settings where noise-induced hearing loss is most likely to occur. COPR Member Works with the NEI in Los Angeles, CA COPR member Roland McFarland is helping the National Eye Institute (NEI) to promote THE EYE SITE, a traveling exhibit on low vision that is on tour in the Los Angeles area through August 31, 2001. The exhibit is currently on display at the South Bay Pavilion in Carson. On May 30, a ribbon-cutting ceremony was held, followed by several public lectures on eye diseases in the shopping center's community rooms. In addition, the host committee has planned a low vision fair with more than 10 groups demonstrating low vision devices. The goal of this exhibit is to reach the general public with the message that there is hope and help for people living with low vision. COPR Member Holds Impromptu Briefing at Honolulu Rotary Club Meeting COPR member Doug Yee, an employee with Morgan Stanley Dean Witter, held an impromptu presentation on the mission of COPR and the NIH for over 60 members of the East Honolulu Rotary Club at the Waialae Country Club in Honolulu, HI. As a member of the West Honolulu Rotary Club, Mr. Yee was attending this meeting as a guest when he heard the all too familiar, "…hmm, our speaker has not shown up. Is there anyone in the audience with anything to say?" Mr. Yee's presentation about the mission of NIH and his role as a COPR member was so informative that members of the audience asked where Mr. Yee's NIH office was located. COPR Member Speaks at NIDCR Public Forum Barbara Lackritz was invited to speak at a Patient Advocates Forum sponsored by the National Institute of Dental and Craniofacial Research (NIDCR) on the NIH campus in Bethesda, MD, on May 7, 2001. Ms. Lackritz's presentation covered the mission of COPR and provided a detailed update on the numerous activities in which COPR members have been involved at NIH. Ms. Lackritz's presentation was described by one NIH staff person as, "…not only informative, but perfectly targeted to the interests of the audience." COPR Member Asked To Serve on NIDCD Working Group on Identifying and Monitoring Hearing Impairment in Infants COPR member Isaac Montoya, Ph.D., was asked to join the NIDCD working group on the Early Identification of Hearing Impairment. One of the first recommendations from this group called for an examination of health care systems issues and communication issues in early identification. The group specifically discussed the goal of resolving the problem of infants who do not return for follow-up evaluation after failing the hearing screening. Dr. Montoya was also invited to attend a May 16th workshop at NIH on Communicating the Need for Follow-up To Improve Outcomes of Newborn Hearing Screening, sponsored by the NIDCD working group. COPR Member Works with NIH on Web Site Accessibility Ms. Pam Fernandes is assisting NIH information technology (IT) staff in reviewing the NIH home page, as well as other aspects of the NIH Web site, for compliance with the new section 508 guidelines. Both the guidelines and NIH's effort aim to extend access to IT resources and tools to people with disabilities. Ms. Fernandes will provide input and feedback on many of these accessibility issues for blind or visually impaired persons.
Public Liasion Meetings, Events and Programs NIAAA Sponsors Workshop for
Providers of Alcohol Treatment Services This free, half-day workshop will focus on the clinical application of naltrexone and the future of acamprosate and address utilization and formulary issues related to both medications that may be of interest to the state directors. Counselors, social workers, and other providers are strongly encouraged to attend. For additional information about the conference and workshop, visit the NASADAD Web site at http://www.nasadad.org/, or contact Kelly Green Kahn at (301) 443-0347 or via e-mail at kgreenka@mail.nih.gov. The pre-conference workshop is open to the public. Opening Ceremony Held for
the NEI Traveling Exhibit V I S I O N Public Seminar on Women and
Addictive Behaviors Public Input and Roundtable
Discussions Part of NIAAA Advisory Council Agenda The National Advisory Council of NIAAA will meet on June 7 in the Natcher Building, Conference Rooms E1 and E2. The meeting will include updates on the Leadership Initiative To Keep Children Alcohol Free; NIAAA's new public service announcements on underage drinking; a report from the Research Priorities Working Group; and a presentation by Raynard Kington, M.D., Associate Director for the Office of Behavioral and Social Sciences Research. Council meetings are open to the public and include space on the agenda for liaison groups and other members of the public to address Council members. Immediately following the close of the official meeting, roundtable discussions will be held with NIAAA Director Enoch Gordis, M.D., and other NIAAA senior managers. The meeting agenda and summaries of previous Council meetings can be found on the NIAAA home page at http://www.niaaa.nih.gov. For additional information, contact Kelly Green Kahn at (301) 443-0347 or via e-mail at kgreenka@mail.nih.gov. THE EYE SITE: A Traveling
Exhibit on Low Vision for Shopping Centers NEI has launched a national multiyear tour of THE EYE SITE, an exhibit developed by the NEI as part of the Institute's Low Vision Education Program. The tour will visit five malls in the Los Angeles area. THE EYE SITE provides information on low vision in English and Spanish and features five kiosks with an interactive, multimedia touch-screen program and a display of assistive devices and local resources. Members of the local host committee sponsoring the exhibit include the Braille Institute of America, the Center for the Partially Sighted, the Doheny Eye Institute, the Jules Stein Eye Institute, the Los Angeles Eye Institute, the Los Angeles Latino Eye Study, the Macular Degeneration Partnership, and the Southern California College of Optometry. Tour details are available at http://www.nei.nih.gov/nehep/eyesite. For more information, contact Jean Horrigan at (301) 496-5248 or by e-mail at jh@nei.nih.gov.
NIH Public Liasion Announcements - Spring 2001 Exercise Video for Older
Americans The National Institute on Aging (NIA) can jump-start your fitness efforts with an inexpensive, at-home exercise program based on government-funded medical research that has been "road tested" by scores of older Americans. The program includes a 48-minute video and a 100-page companion book for people over fifty. Participants who stick with the program for a month receive a certificate of recognition from NIA Director Richard J. Hodes, M.D. To view an online clip of the exercise video, go to http://www.niapublications.org/exercisevideo/index.asp. To order the exercise book and video, mail a check or money order for $7, payable to the National Institute on Aging, to NIAIC, Dept. W, P.O. Box 8057, Gaithersburg, MD 20898-8057. For more information, call 1-800-222-2225. American Indian/Alaska Native
Community Works with NIH Institutes In September 2000, the first NIH-sponsored Community Consultation on the Responsible Collection and Use of Samples for Genetic Research was held in Bethesda, MD. As a follow-up to this meeting, the American Indian/Alaska Native (AI/AN) community conducted a workshop in February in Rio Rancho, NM. The meeting, which was sponsored by both the National Institute of General Medical Sciences and the National Human Genome Research Institute, began the process of creating documents that will help educate both tribal communities and researchers who are conducting genetic research studies with the AI/AN community. In particular, one goal put forth by this group was to educate researchers about the sovereign status of the AI/AN community and to encourage them to recognize the right of AI/AN community members to accept or decline to participate in genetic research. For more information, contact Judith Greenberg, Ph.D., at (301) 594-0943 or by e-mail at greenbej@nigms.nih.gov, or contact Cliff Poodry, Ph.D., at (301) 594-1826 or by e-mail at poodryc@nigms.nih.gov. Public Input Needed for NIAAA's
Newly Designed Web Site The National Institute on Alcohol Abuse and Alcoholism (NIAAA) unveiled a newly designed and enhanced home page on the World Wide Web. New additions to the site include a graphics gallery with photos and illustrations that can be downloaded, a Spanish-language publications section, a "highlights" section, and an expanded section on NIAAA's intramural program. Plans are under way for usability testing to determine if the site is user-friendly. So come check out our new look! The NIAAA home page may be accessed at http://www.niaaa.nih.gov. Contact Mildred Patterson with your feedback at mpatters@niaaa.nih.gov. NIDA Outreach Materials Win
Awards Several National Institute on Drug Abuse (NIDA) products won awards for plain language at NIH. Walking a Good Path, a 2001 calendar, and an artcard promoting the calendar won the award for superior plain-language product. Walking a Good Path provides science-based, intergenerational, and inspirational information for American Indians and Alaska Natives to educate and promote communication regarding drug abuse and addiction among their populations. In addition, NIDA Notes 15(5) and the Mind Over Matter campaign won honorable mentions. NIDA Notes is a research newsletter that reports drug abuse research, identifies resources, and promotes communication among clinicians, researchers, administrators, policymakers, and the public. Mind Over Matter encourages young teens to reject drug use by helping them to understand the effects of drugs on the brain. The series includes magazines, posters, a teacher's guide, and a Web site. For more information, contact Catherine Law at (301) 443-6071. NICHD/NIH 101 Seminar Held
for Public Groups The National Institute of Child Health and Development (NICHD) Office of Legislative and Public Liaison conducted the first "NICHD/NIH 101" seminar for interested members of public groups who wanted to better understand how NIH works. The seminar discussed the history of NIH, how Institutes arrive at their budget priorities, and how NIH shares its research information with the public. The agenda also included a hands-on tour of one of NICHD's labs. Twelve participants attended. The Office plans to hold another seminar in the fall and is exploring how to post the NICHD 101 Seminar on the Web for persons outside the Washington, DC, metropolitan area. For more information, contact Lisa Kaeser at (301) 496-0536 or George Gaines at (301) 435-3447. NIAAA Announces Supplement
Investigating Questions Related to Alcohol and Psychiatric Research NIAAA announced a special supplement to the American Journal on Addictions to its approximately 450 liaison groups. The announcement was an effort to increase public awareness about this resource for persons, organizations, and researchers interested in investigating alcohol-related questions directly and indirectly related to alcohol and psychiatric research. This special supplement of the Journal, titled "Alcohol Research: Achievements and Promise," was released as a direct outgrowth of the May 2000 mini-convention of the same title, which was sponsored by NIAAA at the American Psychiatric Association's 2000 Annual Convention. To receive a free copy (or multiple copies) of the special supplement, contact Cathy Ang at (301) 294-5695 or by e-mail at cang@hq.row.com. The supplement is also available through the NIAAA Web site at http://www.niaaa.nih.gov/publications/publications.htm. NIDA and the Entertainment
Community Hold PRISM Awards NIDA, the Entertainment Industries Council, and the Robert Wood Johnson Foundation sponsored the Fifth Annual PRISM Awards. These awards are bestowed yearly to members of the entertainment community who have accurately depicted drug, alcohol, and tobacco abuse and addiction in their television and motion picture productions. Winning productions included the feature film "Traffic" and TV series "Cosby: Raising Paranoia" (CBS), "Sex and the City: Quitting Smoking" (HBO), "Third Watch: Know Thyself" (NBC), "ER: Carter's Addiction" (NBC), and "Days of Our Lives: Fetal Alcohol Syndrome" (NBC). For more information, contact Beverly Jackson at (301) 443-6245. PBS Special on Ecstasy NIDA funded "Ecstasy," an "In the Mix" special, which aired April 14 on PBS stations nationwide. The special was hosted by 18-year-old Erika Christensen, who played the teen addict in "Traffic". "Ecstasy" examined the short- and long-term effects of ecstasy, ketamine, and GHB; explored the personal and social impact experience by teens in rehab; and defined the legal penalties for possession. For more information, contact Beverly Jackson at (301) 443-6245. NIMH Constituency Outreach
and Education Program: "Research to Reality" The second annual meeting of the National Institute of Mental Health (NIMH) Constituency Outreach and Education Program (COEP) took place in Oakland, CA, on April 22-24, 2001. This was the first meeting where all 50 states and the District of Columbia were represented by Outreach Partners. Titled "Research to Reality," the conference featured a videotaped introduction by NIMH Director Steven Hyman, M.D., and talks by NIMH Deputy Director Richard Nakamura, Ph.D., and COEP Director Elaine Baldwin. Other prominent speakers addressed an array of key topics related to the program's mission, including outreach to primary care physicians, particularly for recognizing depression; outreach to rural populations, older adults, and minority groups; mental illness associated with HIV/AIDS; effective social marketing and media relations; and strategies for leveraging the Internet. Next year's conference, which will welcome Education Network (EdNet) member organizations as well as Outreach Partners, will take place in the Washington, DC, area. The EdNet component of the program is composed of a number of national organizations involved in mental health, general health, medicine, education, business, and academia as well as organizations that represent specific populations-minorities, children and youth, and older adults. Information about the COEP can be found at its Web site, www.outreach.nimh.nih.gov. In the coming months, highlights and resource lists from the annual meeting will be added to the Web site. For more information about the meeting before it becomes available on the Web, contact Elaine Baldwin, COEP Director, at (301) 435-4672 or by e-mail at ebaldwin@mail.nih.gov. NIGMS Advisory Group Discusses
Ways to Promote Dialogue and Involve Communities in Genetic Research The third meeting of the NIGMS Populations Advisory Group was held in the Natcher Building on April 24. The group discussed the best ways to promote a dialogue with communities and to involve communities in genetic research. Because human subjects, especially members of identified population groups, may participate in this type of research, NIGMS has asked the Populations Advisory Group to provide advice regarding the views of, and potential areas of misunderstanding for, individuals and communities who might participate in these studies. The NIGMS Populations Advisory Group consists of nine consultants, including members with basic and clinical scientific expertise, historical knowledge, social policy perspective, genetic counseling experience, and involvement with outreach activities. A representative of the patient community is also a member. The group's purpose is to consider, on an ongoing basis, the possible ramifications of future research in the area of pharmacogenetics-the study of how a person's genetic makeup affects his or her responses to medicines. For more information, contact Rochelle Long, Ph.D., at (301) 594-1826 or by e-mail at longr@nigms.nih.gov. NIAAA Works to Increase Public
Understanding on How Research Is Part of a Balanced Approach to Alcohol
Prevention and Treatment As part of its Alcohol Research to Practice Network, NIAAA recently co-sponsored a research to practice symposium for the public. Hosted by the Addiction Technology Transfer Center at the University of Texas, the symposium-Harnessing Science to Transform Lives-was held in conjunction with the annual meeting of the Texas Research Society on Alcoholism. Approximately 200 treatment counselors, nurses, treatment program clinical directors, program administrators, clinical psychologists, prevention program staff, and doctors attended the exciting multimedia presentations on the use of research as part of a balanced approach to prevention and treatment. Sessions featured presentations from leading national researchers on prevention and treatment development and focused on research implications and their potential applications in program settings. For more information, contact Geoffrey Laredo at (301) 443-6371 or by e-mail at glaredo@willco.niaaa.nih.gov. NIDCR Hosts Second Patient
Advocates Forum The National Institute of Dental and Craniofacial Research (NIDCR) hosted its second Patient Advocates Forum on May 7 at the St. James Hotel in Washington, DC. The conference welcomed 18 patient advocates representing 16 organizations with a shared interest in the oral health effects of their respective disorders and conditions. Among the topics discussed at the forum were clinical trials; NIDCR's plan to eliminate craniofacial, oral, and dental health disparities; and the Surgeon General's report on oral health. Of particular interest to the group was a presentation on designing effective Web sites. COPR member Barbara Lackritz provided an update on COPR activities. For more information, contact Patricia Sheridan at (301) 594-7557 or by e-mail at patricia.sheridan@nih.gov. NCCAM Explores Opportunities
To Collaborate with Industry The National Center for Complementary and Alternative Medicine (NCCAM) sponsored a colloquium, Exploring Opportunities for Collaborating with Industry, to begin a dialogue on how NCCAM and industry can work together to evaluate products for composition, safety, and efficacy and to obtain input from the broader stakeholder community. Leaders from federal agencies and from industry, research, non-profit, and consumer groups focused on issues related to dietary supplements and other biologically based therapies. Following each presentation, attendees were invited to contribute their viewpoints. For more information, visit the NCCAM Web site at http://nccam.nih.gov or contact Irene Liu at (301) 402-7269 or by e-mail at liui2@mail.nih.gov. NIAID Recognizes Volunteers
around the Country on HIV Vaccine Awareness Day The National Institute of Allergy and Infectious Diseases (NIAID) preventive vaccine clinical trial sites from all over the United States sponsored a variety of activities for the Fourth Annual HIV Vaccine Awareness Day. This national event honored thousands of HIV-negative, healthy volunteers who have literally rolled up their sleeves to receive 1 of 29 different experimental vaccines to prevent HIV. Activities included free, all-day community conferences, town meetings, entertainment, food, and educational activities. This year's events emphasized educational and outreach efforts that help people understand why a vaccine would be the best way to stop the spread of HIV, what it will take to develop an effective vaccine, and how ordinary people can be part of the international effort to prevent HIV from ravaging their communities. State, city, and local government officials throughout the United States joined community groups in recognizing HIV Vaccine Awareness Day with proclamations and other tributes to honor volunteers for their efforts in ending the epidemic. For more information, contact James Hadley at (301) 496-5717.
NEWS from the NIH Offices of Public Liaison NIAID Recruits at Local Universities Senior staff from NIAID met with staff from the Career Center at the University of Maryland, College Park, to explore mechanisms to recruit minority students and students with disabilities into the Institute's workforce. As a result, NIAID participated in the University of Maryland Job Fair on April 19 and conducted a presentation to selected students on May 3, 2001. Similar outreach efforts were made at the University of Maryland, Baltimore, on April 12. Future plans include interviews with students at Howard University, Gallaudet University, and George Mason University. Friends of NICHD Learn about
Environmental Effects on Child Health In a meeting with the Friends of NICHD, a group of outside organizations that support the work of the National Institute of Child Health and Human Development, Peter Scheidt, M.D., M.P.H., discussed the Longitudinal Cohort Study of Environmental Effects on Child Health. The Longitudinal Cohort Study will monitor the effects of environmental exposures, as well as biological and social factors, on children's health. Children are especially at risk from environmental influences because of developing systems and enhanced exposure. For more information, contact Dr. Scheidt at (301) 496-6287. Public Input Incorporated
into Strategic Plan on SIDS The National Institute of Child Health and Human Development (NICHD) presented a draft strategic plan on SIDS (Sudden Infant Death Syndrome) at the annual meeting of the SIDS Alliance. The presentation at the SIDS Alliance meeting was well attended and generated many questions and active dialogue. A working group of public and scientific members developed the draft plan in a series of meetings between November 2000 and April of this year. The group posted the draft for public comment on the NICHD Web site, and the SIDS Alliance enhanced the process by creating a direct link between their Web site and the NICHD site. Working group members reviewed the comments and incorporated them into the plan. The SIDS strategic plan will be published in June 2001. For more information, contact Dr. Marian Willinger at (301) 435-6896 or Judith Whalen at (301) 496-1877. Community Consultation with
Mexican Americans In response to concerns about the possible harm that may result from genetic research involving identified populations, the National Institute of General Medical Sciences (NIGMS) has formulated a new policy for depositing population-based samples in the NIGMS-sponsored Human Genetic Cell Repository. The Repository, which houses cell lines and DNA samples for research use by biomedical scientists, now requires that scientists who wish to deposit samples derived from a particular population must first consult members of that population. The first such consultation, involving Mexican Americans in Los Angeles, will be held June 9, 2001, in Los Angeles, CA. At the forum, community members will have the opportunity to react to researchers' plans and to discuss ideas about this ethnic community's participation in an upcoming pharmacogenetics research study of depression. For more information, contact Judith Greenberg, Ph.D., at (301) 594-0943 or by e-mail at greenbej@nigms.nih.gov. Second National Conference
on Drug Abuse and Prevention Research NIDA will hold its Second Annual Conference on Drug Abuse and Prevention Research at the Omni Shoreham Hotel in Washington, DC. This conference will provide an opportunity for researchers and those who work in prevention to explore how NIDA's updated Prevention Principles, derived from research, can be implemented. Participants will also review research-based programs and consider how to apply the results of these programs in ways that benefit youth, families, and communities. This kind of dialogue is important to ensure that the results from research on prevention get to the community action programs that need them. Participants in this conference will also collaborate on plans for the future direction of prevention research and practice. Registration is required. For more information, contact Mildred Prioleau at (301) 468-6008 extension 431, or visit www.mac1988.com.
New Publications for the Public Research Report Series: Hallucinogens
and Dissociative Drugs A summary of the current knowledge about rates of use, methods of action, effects, and acute and long-term dangers of two important classes of drugs of abuse is now available. Hallucinogenic drugs, which include LSD and mescaline, act on the serotonin system to produce profound distortions of the user's sense of reality. Dissociative drugs include the anesthetic agents PCP and ketamine and the cough suppressant dextromethorphan, all of which cause feelings of separation from the body. Ketamine use has increased in recent years; in addition to its conscious abuse, it has also been given to unsuspecting victims to incapacitate them for sexual assaults. To order this free publication, contact the National Clearinghouse for Alcohol and Drug Information at 1-800-729-6686 and ask for PHD867. Research Report Series: Prescription
Drugs-Abuse and Addiction A new research report provides concise but detailed research findings of national interest about the increasing trend in abuse of prescription drugs, including why they are prescribed, how they work in the brain and body, and what happens with improper use. It covers interactions of prescription drugs with other drugs and alcohol, abuse rates among various populations, and what is known about diagnosing and treating prescription drug abuse. This publication is geared to the educated lay public, particularly the elderly, and it includes a list of references and resources for further information. To order this free publication, contact the National Clearinghouse for Alcohol and Drug Information at 1-800-729-6686 and ask for PHD866. Talk to Your Children About
Drugs and Their Dangers (Spanish) Latino organizations and the National Institute on Drug Abuse (NIDA) have developed an intergenerational brochure, Latina Juventud-Hable con Sus Hijos Sobre las Drogas y Sus Peligros (Latino Youth-Talk to Your Children About Drugs and Their Dangers). The brochure covers the risks of drug abuse and addiction and the latest science-based information about inhalants, marijuana, cocaine, methamphetamine, and heroin. To order this free publication, contact the National Clearinghouse for Alcohol and Drug Information at 1-800-729-6686 and ask for PHD854S. Research Report Series: Inhalant
Abuse (Spanish) A new research report on the use and prevalence of inhalants is now available. This report, written in Spanish, presents information on the types of inhalants, the consequences of inhalant use, who abuses inhalants, and where to get help. To order this free publication, contact the National Clearinghouse for Alcohol and Drug Information at 1-800-729-6686 and ask for PHD675S. Principles of Drug Addiction
Treatment: A Research-Based Guide (Spanish) A Spanish-language, research-based guide is now available for new patients who are undergoing treatment for addiction and for their friends and families. This guide provides information about addiction, drug treatment, and recovery; helps guide new patients in getting the most from their treatment; and warns about possible difficulties during treatment and recovery. To order this free publication, contact the National Clearinghouse for Alcohol and Drug Information at 1-800-729-6686 and ask for BKD347S.
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