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Back to > About NIH > Get Involved at NIH > News Bulletins |
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NIH Public Liaison News Bulletin
- Summer 2000
News of the April COPR Meeting The third meeting of the NIH Director's Council of Public Representatives (COPR) was held April 6 and 7 at the National Institutes of Health in Bethesda, MD. Presenters included: 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 included: health disparities, human subjects protections, constituency outreach, and future directions for COPR. At the COPR meeting, the NIH Acting Director, Dr. Ruth Kirschstein, also described recent activities of the COPR members, including their participation in the Government Performance and Results Act (GPRA); the participation of five COPR members in the June NIH budget retreat; the participation of four COPR members on review panels for Institute directors; and the participation of several members in an Advisory Committee to the Director working group, which is reviewing gene transfer clinical studies. The video broadcast from the meeting is posted on the NIH OPL home page at http://getinvolved.nih.gov. The minutes from the meeting will be available on this page as well. Highlights of the Involvement of COPR Members and COPR Associates in NIH Activities 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 April, include: COPR Member Speaks at NIDCR Public Advocates Forum COPR member Ted Castele gave a presentation at the National Institute of Dental and Craniofacial Research (NIDCR) Public Advocates Forum on April 3, 2000, in Washington, DC, at the St. James Hotel. The forum was held to promote communication between patient advocates and the NIDCR and to obtain input from advocacy groups into Institute planning and research. Dr. Castele spoke to the group about COPR and described the various ways that COPR members have worked with NIH. COPR Members Invited to Attend Institute Advisory Council Meetings COPR members have been encouraged to attend Institute Advisory Council meetings as their schedules allow. COPR Member Speaks at NIMH Constituency Outreach Conference COPR member Isaac Montoya participated in a panel on clinical trials at the first annual National Institute of Mental Health (NIMH) Constituency Outreach and Education Program conference in Washington, DC, on May 23, 2000. Dr. Montoya spoke on "Recruiting Minority Groups in Clinical Trials." The conference provided Outreach Partners with research updates, technical assistance, and opportunities to network with other organizations. Members of the Institute's Education Network-national organizations representing mental health, medicine, business, and education-also participated. In June 2000, NIMH issued a request for applications to solicit additional Outreach Partners who will join 18 other state-based organizations selected earlier this year. The Partners help NIMH deliver science-based mental health information to the public, especially minority audiences, and health professionals. For more information see: http://www.outreach.nimh.nih.gov/description.htm. COPR Member Attends Public Liaison Officers Meeting COPR member Bob Roehr attended the June 1 Public Liaison Officers meeting to discuss the Working Group on Outreach to Other Public Members at NIH. The working group is interested in gathering more detailed information on the variety of ways the Institutes incorporate public participation into their programs, activities, information gathering, and decision making. The working group is interested in committees, working groups, councils, and any other structures that include formal public involvement. COPR Members Attend June Advisory Committee to The Director (ACD) Meeting COPR members Rosemary Quigley, Debra Lappin, and Bob Roehr attended the NIH Advisory Committee to the Director (ACD) meeting as members of the Working Group on NIH Oversight of Clinical Gene Transfer Research. The working group presented its findings to the NIH Director on June 8, 2000. The group examined the current NIH framework for oversight and public discussion of clinical gene transfer research and discussed whether the process is appropriate, especially with regard to the respective roles of the Recombinant DNA Advisory Committee and the NIH Guidelines. The working group's report, Enhancing the Protection of Human Subjects in Gene Transfer Research at the National Institutes of Health, can be viewed online at the following Web address: http://www.nih.gov/about/director/07122000.htm. COPR Members Attend June Budget Retreat COPR members Lydia Lewis, Vicki Kalabokes, Ted Castele, and Maurice Rabb joined five members of the Advisory Committee to the Director (ACD) and NIH leadership for the agency's annual Budget Retreat on June 15 and 16 in Bethesda, MD. The retreat was an opportunity to identify research initiatives and areas of emphasis in preparation for the NIH FY2002 budget proposal. NIH Institute/Center Directors presented areas of research opportunity and special needs, requested funds for these areas, and discussed possible new programs. COPR Member Serves on NLM PubMed Central Advisory Committee COPR member Maurice Rabb will participate on the National Library of Medicine (NLM) PubMed Central Advisory Committee. PubMed Central is an electronic publishing technology developed to help NIH disseminate the results of its research to the public and the scientific community. This new service is a Web-based repository that will archive, organize, and distribute peer-reviewed reports from journals in the life sciences as well as reports that have been screened but not formally peer-reviewed. The Advisory Committee will advise the Director, NIH, the Director, NLM, and the Director, NCBI, concerning the content and operation of the PubMed Central repository. Specifically, the committee is charged with establishing criteria to certify groups that submit materials to the system, monitoring the operation of the system, and ensuring that PubMed Central evolves and remains responsive to the needs of researchers, publishers, librarians, and the general public. NIGMS Invites COPR Associates to Attend Community Consultation Workshop The National Institute of General Medical Sciences (NIGMS) invited COPR Associates Diana Lee and Brad Margus to attend a September 25-26 meeting entitled "First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research" at the Bethesda Marriott Hotel. These two COPR Associates also attended the planning workshop that led to this community consultation meeting. The purpose of the September meeting is to address the concern that in the United States, certain populations or individual members of those populations could suffer from discrimination, stereotyping, stigmatization, and other social harm as a result of gathered genetic information. The meeting will convene approximately 60 participants from a broad range of ethnic, racial, and other identified groups to discuss and provide input on the best approaches to protect populations whose members participate in genetic research. NIGMS is sponsoring the meeting along with several other NIH Institutes, the Office of the Director, the National Science Foundation, and the Department of Energy.
Upcoming NIH Public Liaison Activities Office of Research on Women's Health (ORWH) Celebrates
Its Tenth Anniversary The Office of Research on Women's Health (ORWH) at NIH will celebrate its tenth anniversary this fall. The ORWH is the first office in the Public Health Service that is specifically dedicated to women's health and research. The anniversary will highlight the accomplishments of ORWH and NIH, recognize the scientific progress in addressing gaps in knowledge in women's health, and acknowledge researchers, advocates, and other supporters at the forefront of women's health research. In an effort to highlight progress and address the future of women's health research, the ORWH celebration will include a scientific workshop in Masur Auditorium, Building 10, on the NIH campus. An ad hoc committee of supporters of ORWH will host an evening of celebrations on September 10 and 11. For more information, contact ORWH at (301) 402-1770. NIDA Holds International Meeting in Los Angeles on
Street Children and Drugs The National Institute on Drug Abuse (NIDA), the World Health Organization, and the National Inhalant Prevention Coalition will co-sponsor an international meeting, "Street Children and Drug Abuse: Social and Health Consequences," in Los Angeles, CA, to examine the connections between street kids, violence, and drug abuse. At this meeting, NIDA will launch an updated research report of recent studies on the use of inhalants among adolescents in the United States. This report is meant to alert the public to the widespread use of inhalants and the dangers inherent in such use. For more information, contact Michelle Muth at (301) 443-6245. NEI Extends "V I S I O N" Traveling Exhibit Tour This 2,000-square-foot exhibit illustrates how the eye and brain work together to create vision and how researchers are developing ways to prevent visual disorders and diseases. The exhibit includes 10 interactive modules demonstrating how the eye focuses light and how the brain perceives motion and color and processes visual information into a meaningful picture. In addition, V I S I O N features a display of artifacts and a collection of eyeglasses of the "rich and famous." V I S I O N premiered in San Francisco at the Exploratorium in October 1993. Since then, it has been on display in 22 cities, and more than 3.8 million people have seen it. An NEI grantee institution in each of these cities sponsors the V I S I O N exhibit. NEI's V I S I O N Traveling Exhibit tour has been extended to include the following locations:
Obesity Task Force Meets to Provide Public Input The National Task Force on Prevention and Treatment of Obesity will meet on Friday, September 21, 2000, in the Natcher Conference Center on the NIH Campus in Bethesda, MD. The Task Force, sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), will gather experts in the fields of obesity, nutrition, physical activity, and communication to offer guidance on planning the research agenda and the programs of the NIDDK Weight-Control Information Network (WIN). The Task Force also will review and assist the NIDDK in the design of clinical trials. For more information, contact Leslie Curtis at (301) 496-3583 or curtis@extra.niddk.nih.gov. NIDDK Holds Meeting to Review Progress of the
National Diabetes Education Program The Steering Committee of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) will meet in Miami, FL, on October 27-28, 2000, to review the progress of the National Diabetes Education Program (NDEP) and to plan future goals and objectives for the program. The NDEP is a national program, co-sponsored by the Centers for Disease Control and Prevention (CDC), that focuses on cooperative methods to lower the incidence and prevalence of diabetes and its complications in the U.S. The Steering Committee includes representatives of the Juvenile Diabetes Foundation, the American Diabetes Association, and other diabetes-related advocacy groups as well as representatives of minority organizations such as the Links, the National Medical Association, and the Puerto Rican Association of Diabetes Educators. For more information, contact Joanne Gallivan at (301) 496-3583 or Gallivan@extra.niddk.nih.gov. NIDA to Release Native American Calendar The National Institute on Drug Abuse (NIDA) has collaborated with Native American experts and organizations across the country to create an inspirational and educational calendar on drug abuse and addiction. Every month features a powerful image, an insightful quote, and useful information to help American Indian and Alaskan Native parents and elders speak to children about the dangers of drug use. For more information, contact Sheryl Massaro at (301) 443-6245. NIDA To Target Latino Parents and Teens in Two
Fall Public Education Campaigns The National Institute on Drug Abuse (NIDA) will produce seven radio public service announcements (PSAs) and a brochure in Spanish to encourage parents to talk to their children about the consequences of drug abuse. The PSAs will be launched on September 11 at the National Press Club in Washington, DC. For more information, contact Sheryl Massaro at (301) 443-6245. NIDA also will launch PSAs that use scientific evidence to teach young people and their parents that addiction is a brain disease. Four of the PSAs will be in English; three will be in Spanish. For more information, contact Jan Lipkin at (301) 443-6245. NIDA Holds Conference on "Bridging Research and
Practice on Drug Abuse" The National Institute on Drug Abuse (NIDA) and the University of California, Los Angeles, will co-sponsor a conference, "Bridging Research and Practice on Drug Abuse," in Los Angeles, CA, to disseminate research-based information on drug abuse and addiction. Researchers and practitioners will examine ways to enhance ongoing efforts to incorporate research into practice settings. For more information, contact Jack Stein at (301) 443-6036.
NIH Public Liaison Announcements and News NIDCD Pilot Project Fights Noise-Induced Hearing Loss in Local Community The National Institute on Deafness and Other Communication Disorders (NIDCD) piloted a grassroots WISE EARS! health education campaign, which is targeted to vocational students, teachers, health-care workers, librarians, and a variety of community leaders in Worcester, Massachusetts. This pilot project aimed to assess the effectiveness of potential outreach strategies that may educate local communities about the topic of noise-induced hearing loss (NIHL). NIHL is the most common work-related disease, and it affects 10 million Americans. In collaboration with the NIH/OD Hispanic Communications Initiative, NIDCD used grassroots materials and community efforts to reach Hispanic audiences. Results of the pilot project will be shared at a WISE EARS! Summit planned for 2001. WISE EARS! is led by the NIDCD in collaboration with the National Institute for Occupational Safety and Health and features a national coalition of more than 70 government agencies, public organizations, businesses, industries, unions, and advocacy groups. For more information, contact Marin Allen, Ph.D., at (301) 496-7243. NIAMS Launches Diversity Outreach Initiative The health of a nation depends on the health of its communities. Recognizing this, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) launched the first phase of its Health Partnership Program-A NIAMS Diversity Outreach Initiative. The goals of this new program are to address the health disparities in rheumatic, musculoskeletal, muscle, bone, and skin diseases that exist in minority communities. The initial phase of the Health Partnership Program (HPP) has begun as a model community-based program in the African American community in the metropolitan Washington, DC, area. Presently, the focus of the program is on rheumatic diseases. NIAMS staff met with community leaders and representatives in February to gain insight into the community's needs regarding rheumatic diseases. Participants identified ways to provide health education and patient care to the community as well as ways to increase the number of African American investigators. As a result, a health promotion plan has been developed to guide local HPP activities for this particular community. For more information, see the NIH Record at http://www.nih.gov/news/NIH-Record/07_11_2000/story04.htm or contact Kelli Carrington at carringk@mail.nih.gov. NIGMS and the Indian Health Service Collaborate on New Health Research Program The National Institute of General Medical Sciences (NIGMS) and the Indian Health Service (IHS) have announced plans to collaborate on a new program designed to promote, develop, and support centers that will link the Native American community with organizations that conduct health research. The program, Native American Research Centers for Health (NARCH), will pursue this goal by encouraging research on diseases and health conditions that affect American Indians and Alaskan Natives. The NARCH Program also seeks to develop a cadre of American Indian biomedical and behavioral scientists and health professionals who are able to compete successfully for NIH funding. In addition, the program aims to increase the capacity of both research-intensive organizations and Native American organizations to collaborate and produce competitive research proposals. The NARCH Program is being developed in response to concerns raised at the American Indian Research Training Needs Meeting held on the NIH campus in August 1999. The meeting, co-sponsored by NIGMS and the IHS, brought together NIH scientists, health policy makers, and American Indian scientists to discuss the needs of American Indians and to develop a plan of action with regard to biomedical research training. The new program will provide funds to faculty-initiated, scientifically meritorious research projects, including pilot research projects, at NARCH organizations. It also will support projects designed to increase the research skills and numbers of Native American science students. For more information, contact Danielle Wittenberg at (301) 594-3900. NIMH Dialogues with America The National Institute of Mental Health (NIMH) held a town hall meeting at the 50th Annual Mental Health Conference on June 7, 2000, in Washington, DC. NIMH staff scientists presented overviews of current research, and National Mental Health Association members were given the opportunity to ask questions and communicate their opinions about the future direction of the Institute's research. NIAID Convenes a National HIV Vaccine Communications Steering Group The National Institute of Allergy and Infectious Diseases (NIAID) is committed to the development of a safe and effective preventive HIV vaccine. To help reach this goal, NIAID's Division of AIDS has convened a National HIV Vaccine Communications Steering Group that will promote HIV vaccine awareness and education and help to create a supportive environment for future HIV vaccine studies. The Steering Group membership represents individuals from diverse communities and includes recognized leaders in communications, the media, social marketing, community education, health care, HIV advocacy groups, public policy, and HIV prevention. Steering Group members were invited to participate because of their commitment to the development of an HIV vaccine and their knowledge of national and international perspectives and communications challenges associated with HIV vaccine research. For more information, contact James Hadley at (301) 435-8598. "Making NIMH Research Count for All Americans" The National Institute of Mental Health (NIMH) held its 4th Annual Research Roundtable on June 19, 2000, in Washington, DC. Dr. Hyman shared the Institute's balanced approach to increasing knowledge about the human brain and behavior, and addressing critical public health needs. Topics included: Making NIMH Research Count for All Americans; New NIMH Clinical Trials; and Perspectives on Suicide. The forum was attended by organizations with an interest in neuroscience, mental health research, and services research. NIAMS Establishes Patient Representative Group for the Intramural Research Program The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has established a Patient Representatives Group to gather feedback on its programs from patients enrolled in its clinical research studies at the NIH. The research program has established a newsletter as a result of the patient group's activities. The newsletter will include information on clinical investigations, news related to patient care, and articles on the NIAMS research program staff who work on the NIH campus. The Patient Representative Group has met twice; the next meeting is scheduled for the fall. One example of the input from the group indicates that patients would like to know more about the progress and results of the clinical trials in which they are involved. For more information, contact Connie Raab at (301) 496-8190 or Raabc@mail.nih.gov. NIMH Conducts Clinical Trials Focus Groups Recognizing that recruitment of participants is a challenging aspect of clinical trials, NIMH initiated a series of activities to inform the development of effective recruitment strategies for clinical trials in general, and for large-scale effectiveness trials in particular. These activities began with a set of focus groups held July 1, 1999, in Chicago involving adults with bipolar disorder and family members. Four additional focus groups involving adults with bipolar disorder and family members were held February 1 and 7, 2000, at the Veterans Administration Hospital in Baltimore. The main objective of these activities was to learn what factors might motivate or prevent individuals with bipolar disorder from participating in NIMH's multi-site Systematic Treatment Enhancement Program for Bipolar Disorder. A meeting of mental health advocacy group representatives and researchers involved in NIMH's effectiveness studies was held in Washington, DC, in January 2000. In addition, three focus groups were conducted with adolescents on May 10, 2000, in New York City. The focus groups explored adolescents' experience with and perceptions of clinical depression, as well as their attitudes about participating in a clinical trial testing medications and psychotherapy. For more information see http://www.edc.gsph.pitt.edu/stepbd/ or https://trialweb.dcri.duke.edu/tads/index.html or contact Clarissa Wittenberg, Associate Director for Communications, NIMH, at wittenbc@mail.nih.gov. NIDA Launches Public Education Campaign To Combat Anabolic Steroid Abuse by Teens The National Institute on Drug Abuse (NIDA) has initiated a multimedia public education initiative aimed at reversing the rise in the use of anabolic steroids by teens. NIDA is distributing 250,000 copies of a Community Drug Alert Bulletin about anabolic steroids and 150,000 copies of an updated report that describes research regarding anabolic steroids, their effects, and approaches to prevent the use of these drugs. Some 500,000 postcards with messages about the harmful effects of steroids are being distributed in nearly 1,000 locations nationwide. In addition, NIDA is launching a new Web site: http://www.steroidabuse.org. NIDA's partners in the initiative include: National Collegiate Athletic Association, American College of Sports Medicine, American Academy of Pediatrics, National Association of School Nurses, National Federation of High Schools, International Students in Action, and Dr. Drew Pinsky, host of MTV's Loveline and drDrew.com. For more information, contact Michelle Muth at (301) 443-6245. NIGMS Launches Effort To Understand How People's Genes Affect Their Response To Medicines The National Institute of General Medical Sciences (NIGMS) has just announced the first awards to fund the Pharmacogenetics Research Network, a collaborative web of scientists studying the effect of genes on people's responses to a wide variety of medicines, including antidepressants, chemotherapy treatments, and asthma drugs. For more information about the initiative, including summaries of each research project, visit the NIGMS Web site for a news release: http://www.nigms.nih.gov/news/releases/pharmacogenetics.html. Scientists funded as part of the network will deposit their results into a shared information library intended to forge new links between genes and drug response. To educate the lay public about the initiative, NIGMS has produced a non-technical brochure, Medicines for You, that explains pharmacogenetics research. To obtain a copy of the brochure in English or Spanish, contact Alison Davis at (301) 496-7301 or davisa@nigms.nih.gov. The brochure is also available online on the NIGMS Web site at http://www.nigms.nih.gov under the publications list. NICHD Involves Outside Organizations in Strategic Planning The National Institute of Child Health and Human Development (NICHD) has again tapped the Friends of NICHD to develop a research agenda that is based on the Institute's strategic planning framework. The Friends of NICHD is a coalition of about 100 outside organizations that support the work of the Institute. Late last year, NICHD published the first draft framework for a strategic plan, and the Institute sought public comment using the World Wide Web and outreach to voluntary and advocacy groups through the Friends of NICHD. Five working groups have been established, one in each of the institute's primary research areas; representatives of outside organizations will be participating as public members of each working group. For more information, contact George Gaines at (301) 435-3447 or Lisa Kaeser at (301) 496-0536. Public Campaign to Warn of the Dangers of High Systolic Blood Pressure In May 2000, the National Heart, Lung, and Blood Institute (NHLBI) and its National High Blood Pressure Education Program (NHBPEP) launched a major campaign to increase public and physician awareness of the dangers of high systolic blood pressure, also known as systolic hypertension. The cornerstone of the campaign is a clinical advisory recommending that systolic blood pressure be emphasized in the diagnosis and treatment of hypertension in middle-aged and older adults. The campaign also includes a new high blood pressure Web site with separate gateways for the public, health professionals, and community organizations at http://www.nhlbi.nih.gov/hbp/index.html. (Dr. Claude Lenfant, Director of the NHLBI, has noted that high systolic blood pressure is a major health threat, especially for older Americans.) A press release on the campaign may be found on the NHLBI Web site at http://www.nhlbi.nih.gov/new/press/may04-00.htm. NIDA Hosts Meeting on Substance Abuse, HIV/AIDS, and Hepatitis C The National Institute on Drug Abuse (NIDA), along with the Substance Abuse and Mental Health Services Administration's Center for Substance Abuse Treatment and the Centers for Disease Control and Prevention, hosted a meeting, "Bringing It All Together: Drug Use, HIV, and Hepatitis," in Baltimore. At the meeting, NIDA released a Community Drug Alert Bulletin on Hepatitis C. The bulletin provides information to the public and health professionals on the intertwined problems of substance abuse and diseases such as HIV/AIDS and hepatitis C. For more information, contact Michelle Muth at (301) 443-6245.
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| This page was last reviewed on: 5/9/2007 |
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