Director's Council of Public Representatives
Fall 2005 Meeting MinutesOctober 25, 2005Building 31, C-Wing, Conference Room 6, NIH Campus NIH Participants:
COPR Members Attending:
COPR Members Not Present:
Other Speakers and Discussants:
EXECUTIVE SUMMARYThe meeting of the National Institutes of Health (NIH) Director's Council of Public Representatives was held on October 25, 2005. NIH Director Elias A. Zerhouni, M.D., thanked the COPR members for their commitment and dedication. He also announced that on September 29th, the NIH named 13 new recipients of the NIH Director's Pioneer Award. In addition, on October 12, the NIH announced the recipients of the Institutional Clinical and Translational Science awards (CTSAs). The NIH continues to develop the new Office of Portfolio Analysis and Strategic Initiatives (OPASI) to better manage NIH's large and complex scientific portfolio, to coordinate trans-NIH initiatives, and to develop better tools and information for decision-making. Dr. Zerhouni announced the final conflict-of-interest regulations on August 25th. These are intended to protect the NIH's integrity and its ability to provide the public with unbiased information. Dr. Zerhouni and other NIH staff testified at Congressional budget hearings. Given the numerous issues the nation is dealing with the NIH budget likely will not increase in 2006. Dr. Zerhouni called on the NIH community to maintain its forward momentum regardless. Dr. Zerhouni reported that two NIH-supported scientists, Robert H. Grubbs, Ph.D., of Caltech, and Richard R. Schrock, Ph.D., of MIT, received the Nobel Prize. He named three new NIH directors-David Abrams, Ph.D., (Office of Behavioral and Social Sciences Research), Antonio Scarpa, M.D., Ph.D., (Center for Scientific Review), and David Schwartz, M.D., M.P.H., (National Institute of Environmental Health Sciences). Ms. Christina Clark and Dr. Marjorie Mau facilitated a discussion on the topic of the inclusion of trained public reviewers participating in the NIH peer review process and presented results of their information gathering on the issue. Dr. Scarpa presented a perspective of peer review issues from the Center for Scientific Review. COPR members discussed ways in which public participation in the research process currently occurs at the NIH and could occur in the future. COPR members encouraged the dialogue on this topic to continue and encouraged the work group to continue gathering information about where public input and participation could be included in the peer review process and even more broadly in the grant and research process. Dr. Frances Dunston and Dr. Nicolas Linares-Orama reported on progress in developing a process for evaluating the COPR's internal activities, usefulness, and effectiveness. They presented outlines of proposed guidelines for post-report feedback and a post-report tracking check list, developed by the Performance Review Work Group. This led to a general discussion of performance issues, including suggestions such as seeking the counsel of former COPR members, extending the COPR members' term of service, and ensuring wide representation on the Council. Ms. Nicole Johnson Baker and Mr. Michael Manganiello reported on recent efforts of the Communications Work Group. They identified three areas in which the Work Group recommended that the NIH enhance communication efforts: the NIH identity, public outreach and increasing education and awareness efforts to Congressional offices. They presented a list of recommendations for enhancing education and awareness of the NIH, such as streamlining communications to enhance a unified NIH identity and encouraging grantees to identify the NIH in their research publications. The COPR members discussed the recommendations and challenges to communicating the NIH's work to the public. Ms. Wendy Chaite presented highlights of the June 2, 2005, meeting of the Advisory Committee to the Director (ACD), on behalf of absent Dr. Thomas J. Ansfield, the ACD's liaison to the COPR. Drs. Patricia Grady and Yvonne Thompson Maddox reported progress in the NIH Public Trust Initiative, which has as its overarching goal enabling the public to understand and have full confidence in the research that the NIH conducts and supports. They presented a list of proposed activities that the NIH's Institutes and Centers (ICs) might apply to help earn and increase the public's trust in the research process. The initiative itself plans to conduct a series of activities to earn and advance feelings of trust in the research process, such as conducting small-scale outreach to communities and identifying incentives to encourage ICs to adopt activities that earn and build trust in the research process. The COPR members noted two letters of comment from the public. One was on Preparing Public Members to Participate in Peer Review, from Sarena D. Seifer, Executive Director, Community-Campus Partnerships for Health and the other was from William Ash who served as the co-chair for the Los Angeles Breast Cancer Alliance who also affirmed his belief that public members bring a different and important aspect to the peer review process. After the public comment session, COPR members agreed on future COPR meeting dates. WELCOME AND INTRODUCTIONDr. Elias A. Zerhouni The 14th meeting of the National Institutes of Health (NIH) Director's Council of Public Representatives was held on October 25, 2005. NIH Director Elias A. Zerhouni, M.D., welcomed the COPR members and presenters and noted that, since its inception, the COPR has witnessed more than 30 presentations, updates, and reports from Institute and Center directors and their senior staff, and from the Office of the Director. The Council has held a major workshop on building trust and has drafted six reports. Dr. Zerhouni thanked the Council members for volunteering their time and for their dedication. He described that for this meeting, the COPR instituted a new format and that by scheduling a series of focused work group sessions the day before, the new format allowed for longer discussion periods in this daylong open meeting. NIH DIRECTOR'S UPDATEDr. Elias A. Zerhouni Office of Portfolio Analysis and Strategic Initiatives The NIH has been in the process of establishing the new Office of Portfolio Analysis and Strategic Initiatives (OPASI) to better manage NIH's large and complex scientific portfolio, to coordinate trans-NIH initiatives, and to develop better tools and information for decision-making. Changes in science and health (for example, the increase in chronic conditions) are requiring that the NIH have a mechanism that looks across the Institutes and obtains input from a wide spectrum of stakeholders as it plans. The NIH Roadmap for Medical Research serves as a prototype for such a strategy. The OPASI will feature public input and strive to be a bottom-up process, to remove barriers to science, and to increase cross-fertilization. Dr. Zerhouni cited a debt of gratitude to Dr. Dushanka Kleinman for her work in guiding the NIH Roadmap for Medical Research (she has returned to her position at the National Institute of Dental and Craniofacial Research). Dr. Lisa Colpe has taken the position of Acting Assistant Director for Roadmap Coordination. NIH Director's Pioneer Awards On September 29th, Dr. Zerhouni announced the 13 new recipients of the NIH Director's Pioneer Award. This was the second round of awards. The Pioneer Awards reward scientists who take innovative approaches to address major challenges in biomedical research. The program received positive feedback following its first year. The new awardees represent diverse fields, including neuroscience, genetics, epidemiology, chemistry, stem-cell biology, behavioral science, infectious diseases, and technology development. Translational Research Dr. Zerhouni announced that Dr. Barbara Alving had completed her report on progress in the Institutional Clinical and Translational Science Awards (CTSAs) program, and awardees were announced on October 12. Led by Dr. Alving and Dr. Anthony Hayward, the CTSA program seeks to transform clinical and translational research, in order to close the gap between scientific research and clinical work. Reengineering the clinical research enterprise is a centerpiece of the NIH Roadmap for Medical Research. Dr. Zerhouni stressed that translational research itself is a science. The NIH wants to generate new knowledge and perform research using the best knowledge, at the bedside and as a tool of discovery. NIH Ethics Regulations Following publication in April of the interim NIH ethics regulations and the receipt of comments from the NIH staff, the public, and scientific organizations, Dr. Zerhouni announced on August 25th the final conflict-of-interest regulations. Because the NIH provides advice to the nation, it must abide by rules to ensure that it functions in the public's best interest and retains its confidence. The new rules will protect the NIH's integrity and ability to provide the public with unbiased information. The model for conflict-of-interest regulations will evolve over time to address issues such as databases and transparency. At the same time, the NIH will strive not to become overly bureaucratic. Congress and the Budget Dr. Zerhouni and others from the NIH testified at a recent Congressional hearing for the reauthorization of the NIH. Goals to consider in the reauthorization are to institutionalize the process of the NIH common fund and to improve NIH decision-making. Dr. Zerhouni assured the COPR members that the overall goal of Congress is to ensure that the NIH is operating as efficiently and effectively as possible. The NIH continues to operate under a continuing resolution, which holds NIH at the FY 2005 operating level. Hurricane relief and reconstruction likely will result in cuts to final FY 2006 budgets, including that of the NIH. Dr. Zerhouni emphasized the need for the NIH to be ready to find ways to maintain the forward momentum of research in spite of such a result. In particular, human capital-for example, the next generation of scientists-must be supported. Personnel Highlights On October 5, 2005, two NIH-supported scientists received the Nobel Prize. Robert H. Grubbs, Ph.D., of Caltech, and Richard R. Schrock, Ph.D., of MIT, were honored for developing metal-containing molecules that are now used daily in the chemical and pharmaceutical industries to manufacture important compounds. Dr. Zerhouni announced that David Abrams, Ph.D., is the new Associate Director for Behavioral and Social Sciences Research and Director of the Office of Behavioral and Social Sciences Research (OBSSR). Antonio Scarpa, M.D., Ph.D., is the new Director of the Center for Scientific Review (CSR), and David Schwartz, M.D., M.P.H., is the new Director of the National Institute of Environmental Health Sciences (NIEHS). Dr. Schwartz played a leadership role in NIH's relief efforts following Hurricane Katrina. Thomas Gallagher, Ph.D., recently left the post of Director of the Office of Community Liaison, and Mr. John Burklow was chosen to serve as that office's Acting Director. Discussion In response to a question about the shift to an emphasis on trans-NIH processes, Dr. Zerhouni cited new understandings of scientific processes that span different diseases, such as the roles that signaling cells play in cancer, heart disease, and more. Scientific work in genomics and proteomics must span the disease spectrum and not be contained within individual medical-research silos. The budgetary cuts required to meet the expenses of recent events such as Hurricane Katrina likely will cause a slowdown in development of the OPASI program. Regardless, the NIH will continue implementing the NIH Roadmap for Medical Research. As for continuing to nurture young investigators, Mr. Michael Manganiello encouraged the NIH to work with voluntary health agencies. Dr. Zerhouni reminded the group that the NIH budget is an investment in the future. The NIH must be specific and accountable-educating the public about its support for medical/scientific advances. The NIH balances work in the sciences, including psychosocial and environmental sciences. Nevertheless, there is a need for more work in basic behavioral science. The understanding of behavioral science can help to advance the work in other medical sciences. The NIH must support the development of, for example, new measures and tools to study gene/environment interactions and exposures. Dr. Zerhouni recognized the following members of the COPR, who were retiring from the Council, each having served for 3-years: Mr. James Armstrong, Dr. Ruth Browne, Ms. Barbara Butler, Dr. Frances Dunston, Dr. Rafael Gonzales-Amezcua, Senator Jim Jensen, Dr. Dawna Torres-Mughal, and Dr. Ellen Sigal. He remarked on their accomplishments and thanked them for their public service. COPR members attending the meeting were provided copies of recent NIH news releases about the NIH Roadmap for Medical Research, the NIH Director's Pioneer Awards, and the NIH program to transform clinical and translational science. OVERVIEW OF COPR'S WORK EFFORTS SINCE THE APRIL 2005 COPR MEETINGMr. Craig T. Beam and Ms. Christina Clark Mr. Craig T. Beam noted that the work session included presentations on OPASI, the NIH Roadmap for Medical Research, the CTSAs, and the National Electronics Clinical Trials and Research Network (NECTAR). The COPR members strongly support efforts to reach out to communities, especially recent efforts through the CTSAs. Although they recognized a capacity to prepare the public to engage in the clinical research process, they wondered about better preparation and education of the scientific community about the role of the public in the research process. It was pointed out that the request for proposals (RFP) for the CTSAs included a requirement for ideas on engaging communities. Success at training scientists to communicate with communities will depend in part on the fields of research (that is, in some fields the process is more difficult). EXPLORING THE INCLUSION AND TRAINING OF PUBLIC MEMBERS IN PEER REVIEW: A Discussion with NIH LeadershipFacilitators: Ms. Christina Clark and Dr. Marjorie Mau Ms. Christina Clark thanked the many people who had helped to gather information and data on the issue of incorporating public reviewers in the peer-review process. She indicated that she and Dr. Mau had provided background materials to the COPR members in advance of the meeting. This information was meant to provide important background information on the topic. These background materials included information that provided baseline understandings and premises about the qualifications and roles of public members in peer review. Dr. Mau began by further clarifying COPR's interest in this topic. She confirmed that COPR recognizes peer review at CSR and NIH as the gold standard in the field. Within that context, she acknowledged some of the challenges related to this topic, such as the need to recruit and train the best reviewers; to effectively evaluate a broad range of clinical research; and to increase the system's transparency, accountability, and uniformity. Based on what COPR has learned from its previous collaborative work on appropriate involvement of the public in the NIH research process, and noting the expressed challenges in peer review, COPR was initiating a dialogue with NIH leadership on this topic and seeking to continue it, as needed, for the next few COPR meetings. Dr. Mau noted that terminology is still emerging, but for now the term "study participant expert" (SPE) would describe the proposed participants/ trained public reviewers. The intent would be a carefully defined and structured involvement in reviews of research applications involving human subjects (not basic research); and the purpose of involvement would be to provide value-added perspective of the target population to be recruited for studies, which would ultimately help achieve research goals. She emphasized that the SPEs would need to be carefully selected, and trained or experienced in addressing issues such as the adequacy of the recruitment plan, relation of the study design and requirements to participant retention, adequacy of human subjects' protection, and representation of minority populations. Dr. Scarpa noted that the idea of public input into the peer-review process has been considered to some extent for about 10 years, and he outlined issues at the CSR. Most applications received by the CSR are for basic scientific research. The Center often must deal with the difficulty of finding reviewers to represent diseases and complaints from applicants that they were "not properly reviewed." He noted that these reviewers had not gone through a special training for public reviewers. Dr. Sally Rockey agreed that input by the public could have value in particular cases—for example, for research proposals that involve human subjects/clinical research. As the discussion proceeds, the NIH must seek public input where it will add the greatest value. The idea for including trained public reviewers in the review process currently is in an exploratory stage. Ms. Clark commented, that as other Institutes and Centers learn more about these kinds of models for public participation, the concept has the potential of supporting the goal of trans-NIH training programs and activity. Dr. Rockey reminded the COPR that maintaining the integrity of the peer-review process is critical. It was agreed that training reviewer scientists to work with the trained public reviewers will be important. Dr. Scarpa volunteered to report at a future COPR meeting the results of discussions in the CSR's Advisory Committee meeting and invited Ms. Clark and Dr. Mau to continue this dialogue at the January Peer Review Advisory Committee (PRAC) meeting. Issues to consider include whether trained public reviewers will be involved in the scoring of applications. It was noted that in the current model at the NCI, trained public reviewers participate in all aspects of the review including scoring. The NCI's CARRA program features public participants who are cancer survivors, family members of cancer patients, and other persons close to the disease. Dr. Rockey indicated that for research that does not target a specific disease, the inclusion of public reviewers in peer review could be more difficult. COPR members noted that nevertheless, public participation may lead to transparency and better communication. Dr. Mau noted that, from her experience in observing the CARRA program, public representatives can offer advice on issues such as clinical trial recruitment and retention as well as transportation for persons participating in clinical trials. Dr. Zerhouni emphasized the need to insulate the peer-review process from undue pressures. With that in mind, public input in peer review should be guided by the principle that it should occur where it can add value to the process. The COPR members recognized that peer review is only one instance of public input in processes at the NIH. Jennifer Gorman reminded everyone that each Institute and Center has an office of public liaison and avenues for public input. Dr. Zerhouni commented that beyond the peer-review process, the public should be allowed to help the NIH prioritize its work, in part by helping the NIH to understand the environments surrounding diseases and conditions. He mentioned that the public has provided input in the development of RFPs. He also cautioned against any attempt to revamp the peer-review process significantly. The efforts should seek instances in which public input would add a benefit, perhaps for research in specific institutes or for specific diseases. Ms. Butler proposed that public representatives be assigned to the six NIH Advisory Councils responsible for second-stage reviews of applications. Dr. Zerhouni agreed that was an excellent idea, although it perhaps should depend on the Institute involved. Another proposal was to ensure that a communication pathway to inform communities of the results of research funding decisions is in place and includes the public. Dr. Zerhouni suggested holding a pilot program for public input in peer review, to analyze the results, including its impact (or lack of impact). The NIH must examine the spectrum of long- and short-term research goals and how they intertwine, then determine where public input could play a role. Similarly, the NIH and the COPR should also study similar activities for public input that already exist to include determining where public input in peer review would add value, considering placing public representatives on the Advisory Councils, and enriching the public relations process in communities. COPR PERFORMANCE REVIEW WORK GROUP REPORTDr. Frances Dunston and Dr. Nicolas Linares-Orama Dr. Frances Dunston and Dr. Nicolas Linares-Orama reported on progress in developing a process for evaluating the COPR's internal activities, usefulness, and effectiveness. A proposed outline of the process includes the following areas:
The work group also outlined proposed guidelines for post-report feedback and a post-report tracking check list. It generally observed that the COPR would like to be timely in providing its advice on emerging and developing issues and should obtain feedback that indicates how it can positively influence NIH developments. The work group recommended a new meeting format, which would allow the COPR to provide immediate feedback to the Director. It recognized a potential benefit in obtaining input from former COPR members and a need for open communication to determine whether it is operating well. These points led to a discussion of performance issues, which led back to the issue of public involvement in the NIH. Dr. Zerhouni emphasized a goal of identifying the drivers of outcomes and avoiding unnecessary staff and bureaucracy. He welcomed the Performance Review Work Group's report describing an evaluation process to close the performance loop and a structure that affords rapid feedback. Dr. Raynard Kington noted that another way to further tap the experience and knowledge of COPR members would be to extend the period of their service from 3 years to 4 years. Defining a specific product (report, white paper, etc.) for the COPR to create to advise the NIH might be difficult, because of the dynamic nature of the NIH's work. A better role for the Council is selecting topics for NIH to address. Perhaps the COPR should develop ties with the many public representatives who currently serve the NIH in various capacities. The COPR might even evaluate the activities of those representatives, working with the NIH evaluation office. Dr. Zerhouni noted that the Institutional Review Boards (IRBs) have a patient-advocate component. For a number of reasons (for example, the need to blind trials), he recommended not including public representatives on the Data Safety Monitoring Boards. The COPR members suggested seeking ways to ensure that the COPR membership is sufficiently representative (types of diseases, types of health-system experience, etc.). Perhaps the Council should develop new ways to reach out to communities and bring views to the table. The COPR might consider new ways to report NIH progress. One method would be simply to increase contacts and communication. Perhaps the COPR could help to distribute the inventory of NIH public trust activities being compiled by the NIH Public Trust Initiative. It was noted that the COPR already produced a Report on best practices for public input and participation around the NIH. Perhaps the Council could set up teleconferences with the public members of the IC Councils to share information and gather the collective input of public representatives from around the NIH. Dr. Zerhouni recommended that the COPR not develop lists of expectations but instead provide actionable advice. COPR COMMUNICATIONS WORK GROUP REPORTMs. Nicole Johnson Baker and Mr. Michael Manganiello Ms. Nicole Johnson Baker and Mr. Manganiello presented a rationale and suggestions to enhance NIH communications. The NIH's major efforts to transform its operations through the Public Trust Initiative, the NIH Roadmap, reengineering of the clinical research enterprise, and others, require a multiyear campaign to educate the public about clinical research. In the previous day's discussion, the Communications Work Group identified three areas of interest. It recommended that the NIH continue to enhance its communication efforts: the NIH identity, public outreach, and that it increase education and awareness efforts to the Congress on NIH research efforts. The work group recommended streamlining communications to enhance a unified identity for the NIH, holding a meeting with IC directors and communication directors to gain consensus on communication priorities, and urging grantees to acknowledge the NIH in their communications and public reports. Other recommendations included collaborating with voluntary health organizations to increase awareness of the NIH identity, convening a roundtable to evaluate perceptions about the NIH, and considering consultants, as needed, to assist in increasing public awareness of the NIH. The work group recommended instituting regular communications to educate and increase awareness of NIH research efforts and special initiatives with all congressional offices, helping congressional offices to coordinate initiatives in their districts in order to increase awareness of NIH resources, performing outreach to educate other elected policymakers (state and local) about the NIH, and taking advantage of established networks that include the public. The work group recommended that the NIH increase resources for media outreach, including further development of a b-roll for mass distribution, increased public service announcements, and the use of NIH scientists as media contacts. The NIH could use more personal narratives to put a face on scientific research and could increase outreach to consumer-oriented media. In discussion, the COPR members noted challenges to communicating the work and results of the NIH. Mr. Burklow reported recent successes in media outreach and noted the lingering problem of the lack of identification of the NIH in reports and discussions of research results. Yet, the NIH has increasingly been "getting its name out there." He did note that, public service announcements are very expensive. On the other hand, internal strategies, such as convening Institute directors, are not. Needed perhaps is a focus on how the NIH is presented, employing narrative or storytelling, and a sense of conviction. However, many scientists are not comfortable playing roles that are essentially public relations, and the main business of the NIH must be the support of research. Nevertheless, establishing an image of the NIH is important for increasing public trust and awareness of clinical research. The COPR members suggested various ideas: using new names and plain language, reducing the use of initialisms and acronyms (which are off-putting), placing the "NIH" name and logo on more products. Dr. Zerhouni suggested emphasizing to the ICs that there is a strong value in their use of the "NIH" brand. He also suggested increasing the use of strategic communications at local levels to promote the NIH. Others proposed finding ways in which the public representatives within the Institutes could better promote the NIH locally. Mr. Burklow noted that his office has a comprehensive strategic plan for communicating the NIH's work and results. Perhaps the NIH Clinical Center should be featured more in communication strategies, for example, being cited as the source of breakthrough health stories. Dr. James Battey encouraged the group to consider success stories that are accessible to the public. For example, work at the NIH Clinical Center was instrumental in saving the U.S. blood supply and making profound advances in the battle against childhood leukemia. The new effort to reengineer the clinical research enterprise could be seen as an opportunity to promote the NIH. State Senator Jensen suggested that the NIH could make its campus more visitor-friendly and step up its accommodation of visitors/tourists. Former COPR members could be asked to report the number of contacts they make that represent NIH outreach. That could become part of the COPR evaluation. ACD LIAISON REPORTMs. Wendy Chaite Because Thomas J. Ansfield, M.D., the Advisory Committee to the Director (ACD) liaison to the COPR, was unable to attend the meeting, Ms. Chaite presented his prepared statement on his behalf. Ms. Chaite is the COPR's Liaison to the ACD. Dr. Ansfield provided highlights of the June 2, 2005, ACD meeting. Dr. Zerhouni reported on progress in the Neuroscience Blueprint, the interim ethics regulations, and the NIH Roadmap for Medical Research. Nora Volkow, M.D., Director of the National Institute on Drug Abuse, reviewed issues and priorities of her institute. ACD member Arthur Ullian provided an overview of international trends in scientific research. Dr. Kington reviewed progress in developing the OPASI and developing a list of bona fide outside awards for NIH employees. Jeremy Berg, Ph.D., Director of the National Institute of General Medical Sciences, reviewed the NIH Director's Pioneer Award program and described the development of PubChem, the new publicly available NIH molecular database. Norka Ruiz Bravo, Ph.D., Deputy Director for Extramural Research, reviewed the new policy on public access to archived publications funded by the NIH, and Allen Spiegel, M.D., Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), reported on the NIH Strategic Plan for Obesity Research. UPDATE ON THE NIH PUBLIC TRUST INITIATIVE AND RESPONSE TO THE COPR'S PUBLIC TRUST REPORT Dr. Patricia Grady stated that the mission of the NIH Public Trust Initiative is to enable the public to understand and have full confidence in the research that the NIH conducts and supports. The initiative seeks to provide the public with information about how the NIH conducts and supports research, with opportunities to participate in priority-setting and clinical research, and with access to and an understanding of research results. COPR member Ms. Johnson Baker recently joined the steering committee of the Public Trust Initiative. Dr. Grady presented a list of exportable, or adaptable, activities that the NIH's ICs could apply toward increasing public trust. The activities target the internal scientific community, the external scientific community, clinical trial participants, the general public, and the research advocacy community. Examples are intramural retreats (internal scientific community), grantsmanship and training in peer review (external scientific community), a mini-CARRA model for including public members in reviews (clinical trial participants), public education campaigns (general public), and coalitions (advocacy community). In addition, the initiative developed the CTSA, which features community input. Dr. Yvonne Thompson Maddox listed next steps for the Public Trust Initiative. These include conducting small-scale outreach to communities, modeled on a recent outreach activity in Alaska; identifying incentives to encourage ICs to adopt public-trust activities; making presentations to science directors, clinical directors, and others; possibly including communities in grant-award decisions; and emphasizing public trust throughout the NIH campus (for example, using exhibits or publishing local articles). COPR members could act as spokespersons for the Initiative. The Web address for the Public Trust Initiative is http://publictrust.nih.gov. The COPR members suggested that the Initiative track hits to its Web site and collect feedback. They also suggested that the Initiative seek ways to encourage program officers to promote the work of their grantees. The phrase "public trust" has developed a resonance in communities, suggesting that progress is being made. The COPR members proposed that the Initiative consider changing its name, replacing "initiative" with a word suggesting a result, such as "integration" or "transformation." Dr. Grady welcomed further suggestions. PUBLIC COMMENTMs. Clark reported two letters received by the COPR. Mr. William Ash, of Santa Monica, California, co-chair of a local breast cancer organization, wrote that he supports the inclusion of public members on scientific review panels. Ms. Sarena D. Seifer, Executive Director of Community-Campus Partnerships for Health, also wrote that her organization supports the concept of public participation in research—encouraging the inclusion of public representatives in all NIH peer-review processes. NIH DIRECTOR AND COPR MEMBER SUMMARY AND NEXT STEPSDiscussions for initiating the April 2006 Agenda work group will occur in conference calls and E-mail exchanges. That committee will welcome input for any further changes to the format for the COPR meetings. Dr. Zerhouni and the COPR members agreed that the new structure for the work group day and formal COPR meeting day worked very well. Some of the significant suggestions from the meeting included: highlighting the work of the NIH Clinical Center; emphasizing presentation and success stories in NIH communications efforts; using COPR members as communicators; expanding the efforts of the NIH Visitor's Center; creating a newsletter for congressional staff: strengthening the use of Web sites; possibly increasing the COPR member term to 4 years; and, including public members on advisory committees. The spring meeting of the COPR is scheduled for April 20–21, 2006, with new-member orientation on April 19. The next fall meeting is scheduled for November 2–3, 2006. The spring 2007 meeting is scheduled for April 26–27. ADJOURNMENTDr. Zerhouni thanked the participants and adjourned the meeting. LIST OF ABBREVIATIONS AND ACRONYMS
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