Director's Council of Public Representatives
Spring 2006 Meeting MinutesApril 21, 2006Building 31, C-Wing, Conference Room 6, NIH Campus NIH Participants:
COPR Members Attending:
ACD Liaison:
COPR Alumna/Special Expert:
Other Speakers:
EXECUTIVE SUMMARYThe meeting of the National Institutes of Health (NIH) Director’s Council of Public Representatives was held on April 21, 2006. NIH Director Elias A. Zerhouni, M.D., welcomed four new COPR members, Syed M. Ahmed, M.D., Dr. P.H., M.P.H., Linda Crew, M.B.A., R.N., Ann-Gel Palermo, M.P.H., and Mr. James H. Wendorf. Dr. Zerhouni provided updates in a number of areas. The NIH continues to develop the new Office of Portfolio Analysis and Strategic Initiatives (OPASI), which Dr. Zerhouni characterized as “an intellectual venture space, offering funds for shared needs and affording adaptability.” NIH has a strong bio-defense effort and the National Institute of Allergy and Infectious Diseases (NIAID) will make use of the new C.W. Bill Young Center on the NIH campus to expand its research on diagnostics, vaccines, and treatments for diseases caused by infectious agents that might be released into civilian populations or re-emerging infectious diseases. NIH is concerned about encouraging new investigators. The NIH Pathways to Independence Award Program, announced in January 2006, will help to enhance the ability of new scientists with fresh ideas to enter the competitive world of NIH funding. The program will provide postdoctoral candidates with funding to bridge between mentored research and a first independent research award. Dr. Zerhouni announced several staff changes. Roger I. Glass, M.D., Ph.D., has been named the new Director of the Fogarty International Center and Associate Director of NIH for International Programs. He is a leading scientist and recognized expert in the development and introduction of rotavirus vaccines. Allen Spiegel, M.D., is leaving the NIH to become Dean of the Albert Einstein College of Medicine. Dr. Spiegel served more than 6 years as Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Dr. Zerhouni shared with COPR members the slide-presentation that he gave at the April 6, 2006 hearing on the FY 2007 Budget Request before the House Subcommittee on Labor. His testimony emphasized the return on investment that the NIH provides for Americans. For example, a 63 percent decrease in mortality from coronary heart disease during a recent 30-year period accounted for about 1 million early deaths averted and $2.6 trillion in economic return to the public. Francis S. Collins, M.D., Ph.D., Director of the National Human Genome Research Institute, described advances in genomic research, focusing on the current HapMap consortium, which is applying a whole genome–association approach to analyzing DNA SNPs for diseases. Other large genome-analysis programs underway include the Genetic Association Information Network (GAIN) and the Genes and Environment Initiative (GEI). Mr. Andrew C. Baldus, Acting NIH Budget Officer, provided an update on the NIH budget, which represents about 1 percent of the FY 2007 U.S. budget and, at $28.6 billion, continues a flat trend that has followed the period in which the budget was doubled. Priorities in the FY 2007 budget include biodefense-related activities, the NIH Roadmap for Medical Research, the genes, environment and health initiative, pandemic influenza activities, and support for new investigators. Mark L. Rohrbaugh, Ph.D., J.D., reviewed activities of the NIH Office of Technology Transfer (OTT), which identifies, evaluates, protects, and markets technologies derived from NIH intramural laboratories. The OTT supports about 6,000 scientists and their laboratories at the NIH. Dr. Rohrbaugh described the process by which his office develops patents and licenses for NIH researchers, sometimes involving collaborative arrangements with private companies. Nicole Johnson Baker, M.A., M.P.H., and Michael Manganiello, M.P.A., reviewed recommendations of the October 2005 COPR meeting on issues before the Communications Work Group, which they co-chair. In addition to praising ongoing and accelerating communication efforts by NIH, they focused on additional opportunities to unify the NIH identity, increase efforts to educate Congressional staff and increase communication efforts about NIH research activities. They recognized recent efforts by the NIH, including discussions between Dr. Zerhouni and IC directors to consider combined communication efforts, Dr. Zerhouni’s testimony to Congress, and the development of Institute and Center communication plans. Christina Clark. M.A., M.B.A., presented to Dr. Zerhouni a list of recommendations developed by the COPR members in the April 20 work group session. These included:
WELCOME AND INTRODUCTIONElias A. Zerhouni, M.D. The 15th meeting of the National Institutes of Health (NIH) Director’s Council of Public Representatives was held on April 21, 2006. NIH Director, Elias A. Zerhouni, M.D., welcomed the COPR members and presenters and expressed gratitude for the fresh perspectives that the COPR representatives have offered in past meetings. Dr. Zerhouni formally presented four new COPR appointees: Syed M. Ahmed, M.D., Dr.P.H., Director of the Center for Healthy Communities, Medical College of Wisconsin; Linda Crew, M.B.A., R.N., Director of the Joseph F. Sullivan Center at Clemson University; Ann-Gel Palermo, M.P.H., Associate Director of Operations at the Center for Multicultural and Community Affairs, Mount Sinai School of Medicine; and Mr. James H. Wendorf, Executive Director of the National Center for Learning Disabilities in New York City. Dr. Zerhouni thanked five members of the COPR who rotate off the Council this year, and who attended the meeting to offer their expertise: Mr. James Armstrong, Ruth Browne, Sc.D., M.P.H., M.P.P., Ms. Barbara Butler, Frances Dunston, M.D., M.P.H., and Dawna Torres Mughal, Ph.D., R.D. He stated that the experiences and collective knowledge of the COPR members have brought much insight to NIH staff and efforts to enhance the public’s perspective in the research process. DIRECTOR’S UPDATEDr. Elias A. Zerhouni View the presentation (pdf) OPASI The Office of Portfolio Analysis and Strategic Initiatives (OPASI) is both a platform and a process. OPASI allows all NIH institutes to come together to discuss the broad needs of science and medicine and consider what must be done. Including a knowledge-management effort, OPASI represents a far-sighted approach to understanding science and advancing the frontiers of science, leading to translation at the bedside. Dr. Zerhouni stressed that OPASI is not an administrative structure. Rather, it is an intellectual venture space, offering funds for shared needs and affording adaptability. Such a concept will characterize knowledge-based organizations in the 21st century. OPASI will make the work of the NIH more transparent. The C.W. Bill Young Center The bio-defense mission of the NIH received a large part of the increase in funding that occurred during the doubling of the NIH budget. The National Institute of Allergy and Infectious Diseases (NIAID) has served as the lead institute in the use of these funds and will use the integrated research facility in the new C.W. Bill Young Center (Building 33) on the main NIH campus. The Center will allow the NIAID to expand its research programs for developing new and improved diagnostics, vaccines, and treatments for diseases caused by infectious agents that might be released into civilian populations and re-emerging infectious diseases. The Pathways to Independence Award Program On January 27th, 2006, Dr. Zerhouni announced the NIH Pathways to Independence Award Program, which targets and supports new investigators. In a period of transition, including an increased capacity for research and constrained budgets, the category of investigator most at risk is the group of scientists who are just beginning their careers. The Pathways to Independence Award Program will help to enhance the ability of new researchers with fresh ideas to enter the competitive world of NIH funding. The program will provide postdoctoral candidates with funding to bridge between the time when they are doing mentored research and when they win their first independent research award. This should result in the funding of 150 to 200 additional scientists each year. An initial 1- to 2-year phase will allow investigators to complete supervised research, publish results, and search for an independent research position. A second, 3- to 5-year phase will allow awardees who secure an assistant professorship or equivalent position to establish a research program and apply for an NIH investigator-initiated grant (R01). Investigators are at a disadvantage early in their careers because they do not have as much experience and data as seasoned investigators. To counter this, Dr. Zerhouni has proposed that reviewers consider the potential of an investigator in addition to the proposed project. Also, the NIH will attempt to inform investigators whether their applications have succeeded within 4 or 5 months, thereby allowing them to reapply at the 9-month mark. Leadership Update The NIH recruited Roger I. Glass, M.D., Ph.D., to be the new Director of the Fogarty International Center and Associate Director of NIH for International Programs. Dr. Glass is a leading scientist and a recognized expert in the development and introduction of rotavirus vaccines in the developing world. Dr. Zerhouni noted that Sharon Hrynkow, Ph.D., has performed an outstanding job as acting director and in representing the NIH internationally during the search for a new director. Allen Spiegel, M.D., who served more than 6 years as Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), will become Dean at Albert Einstein College of Medicine of the Yeshiva University. Griffin Rodgers, M.D., M.A.C.P., has agreed to serve as the Acting Director of the NIDDK. Status of the NIH Budget On April 6th, Dr. Zerhouni presented the FY 2007 Budget Request to the House Subcommittee on Labor. He will make the request to the Senate on May 19th. The NIH is working in a tight budgetary environment now. Testimony Given at the House Appropriations Hearing Dr. Zerhouni shared with COPR members the slide-presentation that he gave at the April 6, 2006 hearing on the FY 2007 Budget Request before the House Subcommittee on Labor. His testimony emphasized the return on investment that the NIH provides for Americans. For example, a 63 percent decrease in mortality from coronary heart disease during a recent 30-year period accounted for about 1 million early deaths averted and $2.6 trillion in economic return to the public. On average, each American made an investment of about $110 toward this goal during the 30-year period (about $3.70 per year). Reasons for the decreased mortality included new, effective treatments, prevention strategies, and medical discoveries. Dr. Zerhouni’s presentation provided a similar analysis and result for increased cancer survivorship during the 30-year period. For the first time in recorded history, annual cancer deaths in the United States have fallen. NIH funding is the seeding and leveraging that leads to such results. During the period of doubling of the budget, the NIH was able to rapidly respond to critical issues such as the anthrax attack and SARS. In part because of that investment, it has been able to develop vaccine trials to counter the potential avian flu. The Vaccine Research Center developed more than 14 new vaccines in 5 years. The NIH has also been able to move into new areas such as genomics and bioinformatics. Between 1998 and 2004, the increased funding of the NIH helped to bring more than 3,000 new technologies to market, with the help of 185 research institutions across the nation. Dr. Zerhouni presented to the House subcommittee a vivid example of a benefit of NIH research that involved interdisciplinary efforts. Showing a before- and after-treatment video clip of a patient suffering from Parkinson’s disease who was treated successfully using deep brain stimulation, he described the process that was developed by neurophysiologists, neurologists, engineers, and computer specialists to produce this extremely powerful result. He noted also that during the past 20 years, the disability rate for elderly Americans decreased by 30 percent. People are living longer, as the most recent data on life expectancy showed. The NIH is making medical progress across the board. The investment in the NIH is about $95 per American citizen per year. One fallacy that must be rebutted is that more research leads to a more expensive health care system. Deploying medical procedures more widely leads to increased overall expense, yet new technologies and approaches lead to lower unit costs and better quality of life. The medicine of the future must go beyond curing to become predictive, personalized, and preemptive. As such, it will be transformed. Discussion The COPR members pointed to recent advances in promoting the NIH and its work, and Dr. Zerhouni gave credit to the Institute and Center (IC) directors who have rallied their staffs in that area. He noted that the slide show presented to the congressional subcommittee is available on the NIH Web site. COPR members and others should feel free to download it and use it. One challenge in promoting the NIH is that funded investigators are not in the habit of crediting the NIH and often are not natural communicators. Dr. Zerhouni stressed that communication must be local and multi-channel. A sense of community is important—we never know where progress may occur. Ms. Wendy Chaite emphasized a need for participation, suggesting that the word might be added to the list of guiding principles (predictive, personalized, preemptive) AND “participatory”—for medical research in the future. UNLOCKING THE SECRETS OF COMMON DISEASES: THE GENES AND ENVIRONMENT INITIATIVESFrancis S. Collins, M.D., Ph.D. Francis S. Collins, M.D., Ph.D., provided an overview of advances in genomic research, reflecting on his work and that of others. The human genome project was completed in April 2003. On April 25, 2006, the anniversary of the publication of Crick and Watson’s paper on the structure of DNA, scientists will visit high school biology classrooms to discuss their research with students. Also, scientists at the NIH will conduct a live Web chat with classrooms across the country, focusing on work in genomics. The DNA instruction book—the reference sequence—is available on the Internet. Of great interest now are the variable parts of DNA—those pieces that make us different and hold the clues to hereditary disease. Virtually all diseases have some hereditary influence. A great challenge will be the discovery of the genetic basis for diseases that result from the complex influence of multiple genes. Genetics plays a role even in infectious diseases. Discovering the genetic variants that play roles in disease raises the possibility of preventing disease by indicating preventive measures and by pointing to drug targets. The variants in DNA, called single nucleotide polymorphisms or SNPs, are subtle. There are about 10 million SNPs, and the cost of performing a controlled scientific study to genotype all DNAs for all SNPs for a single disease would be prohibitive. For that reason, stated Dr. Collins, the HapMap consortium was developed to apply a whole-genome-association approach to analyzing DNA SNPs for a disease. This method, being conducted internationally and led by the NIH, identifies and employs a smaller set of “tag” SNPs, reducing the cost of genotyping for a disease from about $10 billion to about $2 million. The first HapMap success story was the identification of SNPs for age-related macular degeneration. Dr. Collins serves as project manager of HapMap. The project is benefiting from previous NIH-funded studies that had collected DNA samples on various diseases. Another initiative, the Genetic Association Information Network (GAIN), is a private-public partnership involving the NIH, the Foundation for NIH, and a number of pharmaceutical companies. It will support the genotyping of seven common diseases (to be determined in the grant application process) through whole-genome association studies. The research will begin in the summer of 2006, and the eventual results will be made available on the Web. Information is available at www.fnih.org. Yet another effort, the Genes and Environment Initiative (GEI), is a synergistic program proposed in President Bush’s FY 2007 budget and strongly supported by HHS Secretary Michael Leavitt. The program will use $40 million to increase understanding of both genetic and environmental contributions to disease. It will include a GAIN-like genomic initiative and innovative projects to measure environmental exposures, dietary intake, and physical activity. Dr. Collins predicted that the major genetic risk factors for common diseases, including diabetes, cancer, heart disease, autism, hypertension, bipolar illness, asthma, Alzheimer’s disease, osteoporosis, and others, will be identified in the next 2–3 years. This will make possible future advances in diagnostics, pharmacogenomics, and therapeutics. Discussion Dr. Collins remarked that, although genomic science is compelling, it also raises ethical, legal, and social concerns. The possibility of genetic information leading to discrimination (as in health insurance) is real, and the Federal Government must provide protections. Some scientists opt out of genetic research because of ethical concerns. The emergence of a research culture that encourages cross-Institute collaborations has benefited genomic studies such as HapMap. In some ways, the environmental contributions to disease are more difficult to understand than the genetic contributions. For example, people respond uniquely to environmental exposures. However, recent advances in measures of environmental exposure (chips, nanotechnology) offer great promise. The environment could offer the best opportunity to prevent and treat disease. The National Institute of Environmental Health Sciences (NIEHS) is creating a training program in genomic environmental science that will develop leadership. Annelise Barron, Ph.D., suggested that the NIH partner with the Environmental Protection Agency (EPA) to perform activities such as profiling toxins in cities. UPDATE ON THE NIH BUDGETMr. Andrew C. Baldus View the presentation (pdf) Mr. Andrew C. Baldus provided an update on the NIH budget, which represents about 1 percent of the FY 2007 U.S. budget. The FY 2007 NIH budget of $28.6 billion continues the flattening that has followed the period in which the NIH budget was doubled. Mr. Baldus showed how the NIH budget will be apportioned among the NIH Institutes, Centers, and other operations, ranging from the National Cancer Institute ($4.754 billion) and National Institute of Allergy and Infectious Diseases ($4.396 billion) to facilities ($81 million) and the Fogarty International Center ($67 million). Priorities in the FY 2007 budget include the following:
Research project grants (RPGs) account for 52.9 percent of the FY 2007 budget. In addition, about 10 percent will support research centers, and 2.7 percent will support research training. Intramural research at the NIH will account for 9.7 percent of the budget. Mr. Baldus noted that 84 percent of NIH funding will support work outside the NIH, including more than 200,000 scientists and more than 3,000 organizations worldwide. The FY 2007 budget will support 37,671 RPGs. This is a decrease of 656 from FY 2006. The budget will support 9,337 competitive RPGs, an increase of 275 over FY 2006. The success rate for grant applications will be about 19 percent, which is similar to that of FY 2006, although lower than the FY 2005 rate of 22 percent. The decrease in success rate is explained in part by a large increase in the number of applications during the past 3 years. For the 30-year period 1977 to 2006, funding for the NIH represented an average investment per American of about $44 per year (about $ 1,334 for the entire period). Additional budget information is found at http://officeofbudget.od.nih.gov/ui/homepage.htm. Discussion The COPR members expressed concern about the effects of flat funding for the NIH. Mr. Baldus responded that, as a result, the directors of the ICs are challenged to make decisions about priorities. Dr. Barron noted that some grant amounts have been cut and some benefits (for training grants) capped. Dr. Zerhouni added that the Institutes managed, nevertheless, to increase the number of competitive grants for FY 2007. NIH TECHNOLOGY TRANSFERMark L. Rohrbaugh, Ph.D., J.D. View the presentation (pdf) Mark L. Rohrbaugh, Ph.D., J.D., reviewed activities of the NIH Office of Technology Transfer (OTT), which identifies, evaluates, protects, and markets technologies derived from NIH intramural research program, which includes about 6,000 scientists and their laboratories. Technology transfer refers to the movement of information, materials, and technologies from research laboratories to the commercial enterprise and other laboratories. These products support additional research and lead to the development of new products that ultimately improve public health. The OTT uses intellectual property rights, such as patents, to stimulate commercial development of technologies through the use of license agreements. The OTT also licenses to companies unique materials, such as mouse models for particular diseases, for research purposes. The OTT’s goals are to improve public health, attract new research-and-development resources to technologies, obtain a reasonable return on public investment through the collection of royalties, and stimulate economic development. It reviews inventions received from ICs, handles their patenting, and administers licensing to companies. Each IC has its own Technology Development Coordinator, and some additional supporting staff, to negotiate collaboration agreements for intramural scientists and receive the initial invention reports that are forwarded to the OTT. License royalties flow back to the ICs of the NIH, and inventors receive a share of the funds. Dr. Rohrbaugh described the process by which his office licenses technologies to companies for commercial development, sometimes involving collaborative arrangements between the inventor scientists and the company. He cited recent successes. Researchers at the National Cancer Institute discovered that keratinocyte growth factor could be used as a treatment for oral mucositis, a side effect of chemotherapy treatment for cancer. The technology was licensed in 1992 to Amgen, which then developed it as the commercial product Kepivance. The OTT managed the licensing of a patent to a cardiovascular stent that is coated with the compound paclitaxel (embedded in a polymer), resulting in less scar tissue and less re-growth of blockages in arteries. Angiotech initially licensed this technology in 1996 and developed it in collaboration with Boston Scientific launched the product TAXUS Express last year. Patents were issued in 1997 and 2002. More than 200 products that have reached the market include, in part, technologies developed in the NIH intramural research program. Many are research tools, such as mouse models and cell lines, but 24 are FDA approved drugs and vaccines. The OTT has more than 1,500 active licenses. These activities produced a return of about $98 million in royalties for the NIH in FY 2005—funds that supported research and technology transfer programs. The ICs have executed more than 1,600 cooperative agreements with industry. The OTT also licenses technologies internationally in many countries, including Brazil, China, Egypt, India, Indonesia, Korea, and Mexico. The Office hosts a Web site that focuses on neglected diseases and lists technologies available for licensing to address them. It also hosts technology training for people from institutions in developing countries and minority serving institutions in the U.S. The general Web site for the OTT is at www.ott.nih.gov. Discussion The COPR members encouraged the OTT to highlight its achievements, including eventual cost savings, as in the development and use of the coated stent. Dr. Zerhouni remarked on the phenomenon in which a new medical technology initially leads to higher total costs for care, even as unit costs decline and quality of life improves. Ms. Chaite proposed creating an awards program to encourage creative efficiencies. Dr. Ahmed proposed creating a platform that allows the public to be involved in technology transfer. Dr. Rohrbaugh noted that an effort to speed-up the approval of new technologies (reducing the 10-year period) is part of the NIH Roadmap for Medical Research. The law states that, for extramural work, researchers must assign inventions to their institutions, which then have the right to license them and receive royalties (a portion of which is returned to the inventors). Dr. Rohrbaugh noted that the NIH has a policy and model agreement for bioprospecting in localities. When the NIH licenses an invention based on one of these locally derived materials, the company is required to come to an agreement with the authorities in that locale as to ways to bring a benefit to its population. The COPR members discussed issues concerning the distribution of royalties and the difficulties of starting a company based on new technologies. Dr. Rohrbaugh stated that the OTT attempts to be flexible with start-up companies, for example, having them use limited funds for additional research rather than royalty payments at this early stage. The NIH Roadmap for Medical Research has initiatives to help start-up companies. Beginning about 15 years ago, the amount of royalty income to the NIH has grown dramatically. It leveled off a few years ago, then, in the past year, doubled. The institutes responsible for the inventions leading to royalties make the decisions about how to use the income after a share is paid to the inventors. OVERVIEW OF COPR’S WORK GROUP DAYMr. Craig T. Beam View the presentation (pdf) Mr. Craig T. Beam outlined the agenda of the work-group program that took place the day before (April 20). This included:
EFFORTS AND PROGRESS SINCE THE OCTOBER 2005 COPR MEETINGFrances J. Dunston, M.D., M.P.H., F.A.C.P., and Frances J. Dunston, M.D., M.P.H., co-chair of the Performance Review Work Group, related the group’s progress and presented to Dr. Zerhouni and the COPR its final products, including a Planning Table to help the COPR with internal processes and a Post-Report Evaluation of Effectiveness Tracking Table to follow the results of reports and recommendations. The work group had been charged with developing strategies to evaluate the performance and influence of the COPR. The Performance Review Work Group recommended steps to orient new members regarding the status of COPR activities, to share COPR progress with former COPR members, to seek input from COPR alumni, to prepare a progress report, to debrief outgoing members, and to conduct self-assessments. COPR WORK GROUP DAY REPORT FOR THE NIH DIRECTORChristina Clark, M.A., M.B.A. View the presentation (pdf) Christina Clark, M.A., M.B.A., presented to Dr. Zerhouni a list of recommendations developed by the COPR members in the previous day’s work-group sessions. These included:
The COPR Agenda Work Group was tasked with developing an agenda for the fall 2006 COPR meeting. A subset of the Agenda Work Group will gather data on patient and health categories, emphasizing underserved and under-recognized populations. The COPR members noted that recent trends in the representation of women and minorities in clinical trials are good. Dr. Zerhouni responded to the COPR members’ list of recommendations. He stated that public participation in the research process, where appropriate, is an intention of the NIH. In fact, many research projects do feature public involvement. An award for such participation likely would be an insufficient strategy. The NIH is striving to increase the pool of minority researchers by offering competitive opportunities. The COPR members noted efforts by the National Academy of Sciences to address disparities and proposed inviting a member of that organization to address the COPR. COPR COMMUNICATIONS WORK GROUP REPORTNicole Johnson Baker, M.A., M.P.H., and Michael Nicole Johnson Baker, M.A., M.P.H., and Michael Manganiello, M.P.A., reviewed recommendations of the October 2005 COPR meeting regarding issues for the Communications Work Group. These included focusing on the NIH identity, enhancing efforts to educate Congressional staff and increasing communication efforts about NIH research activities. The following related activities have since occurred:
The Communications Work Group further affirmed the need for resources to communicate medical research to the public and stated its desire to play a larger and integral role in this effort. The work group could serve as a point of contact for the public perspective in the clinical research awareness and education campaign. It could work with the NIH to develop a COPR Community Ambassador Program and could plan COPR involvement in regional educational events. Valda Boyd Ford, M.P.H., M.S., R.N., reported the success of a unique effort to reach out to local underserved women by holding a red dress affair, a dinner, attended by 400 women, which conveyed the importance of heart health and recognized the contributions of the NIH. Mr. Wendorf proposed that, to increase visibility, the NIH disseminate to the public a document similar to an Annual Report, or something on a smaller scale that that would include important data about the NIH’s activities. ACD LIAISON REPORTAnnelise Barron, Ph.D. Annelise Barron, Ph.D., member of the Advisory Committee to the Director (ACD), expressed her appreciation for becoming the new ACD liaison to the COPR. She summarized the topics of the ACD’s December 2005 meeting, which included: implementing the Office of Portfolio Analysis and Strategic Initiatives (OPASI), initiatives for new scientists, accelerating the grant process at the Center for Scientific Review (CSR), and establishing rules governing outside awards for NIH employees. Dr. Barron stated that she looked forward to offering the COPR her perspective as a researcher on the many issues the COPR will tackle and discuss during her term. In particular, she wondered about the possibility of looking into options for voluntary organizations or other foundations to fund grant applications that nearly, but do not, receive funding by the NIH. NIH DIRECTOR AND COPR MEMBER SUMMARY AND NEXT STEPSMr. Beam stated that the Communications Work Group will continue its efforts. The COPR will create a new work group to focus on the issue of the role of the public in research and promoting public participation in the research process from beginning to end, including community-based-research. A subset of the Agenda Work Group will be formed to consider minority issues. Dr. Zerhouni thanked the COPR members for their many helpful ideas. He reminded the group that small ideas can lead to large results. The next meeting of the COPR will take place November 2 and 3, 2006. ADJOURNMENTDr. Zerhouni adjourned the meeting. LIST OF ABBREVIATIONS AND ACRONYMS
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