Fourth Annual Public Interest Organization Meeting
February 5, 2003 - Bethesda, Maryland
Dr. Claude Lenfant, Director, NHLBI, welcomed everyone to the meeting. He noted how attendance at each annual meeting has increased and described the agenda for the present meeting, which reflects suggestions from the PIOs at previous meetings. He encouraged the PIO representatives to take advantage of the many opportunities to interact at the meeting. The Institute's goals for the meeting were to enable the PIOs to learn about and reinforce each other's activities and to help them promote effective translation of NHLBI-sponsored research to patients and the public. Dr. Lenfant emphasized the importance of the discussion periods, and he encouraged all PIO representatives to participate. He invited all participants to attend the meeting of the NHLBAC on the next day.
Future Directions of the National Institutes of Health
Dr. Elias Zerhouni, who has been the NIH Director since May 2002, shared his perspective on recent NIH activities. He commented that Congress is particularly interested in hearing what the NIH has accomplished with the doubling of its budget over the past 5 years — especially in the translation of research findings to benefit the American people — and where the NIH is going. Dr. Zerhouni noted that NIH researchers have made great strides (e.g., reducing the mortality from heart disease and stroke by 60 percent, controlling acute diseases) and now are called upon to focus on new challenges (e.g., managing chronic diseases related to complex disorders of the biological system, organizing research to perform better). Specific questions to be addressed include:
During the past 6 months, NIH has been engaged in an exercise to develop an "NIH Roadmap." Conceived by Dr. Zerhouni to address the questions above, this exercise has led to identification of three themes for fiscal year (FY) 2004 and beyond:
Dr. Zerhouni elaborated on each theme. The goal of the first is to gain a better understanding of the complex biology of the human body — for example, the 2,400 proteins thought to be involved in signaling within and between cells, and the 305 genes currently thought to be involved in the metabolism of fats. To do this research well, scientific teams have to be organized differently than in the past and new operational models (e.g., for research training) have to be devised — the goal of the second theme. One new approach is NIH support of "glue grants" that unite multiple teams of investigators representing many different disciplines in collaborative studies of complex questions.
The goal of the third theme is to improve the clinical research enterprise by identifying and pursuing better and faster ways to translate the many opportunities from basic discoveries into real benefit. The NIH needs to be committed to all diseases and conditions, including rare, or "orphan," diseases. It is working with the Food and Drug Administration (FDA) to improve the regulatory pathway; it is reconsidering its own translational pathway; and it is re-examining how clinical research is conducted. Dr. Zerhouni mentioned plans to construct an NIH-wide clinical information system that would include common standards and research codes.
Dr. Zerhouni identified recruitment of young scientists into research as a primary concern. Today, first-time NIH grant recipients are older than in the past (39-40 years old versus 32-33 years old in the 1960s and 1970s) in large part because research training takes longer. Dr. Zerhouni observed that academic tenure committees attach great importance to a candidate's record of NIH support.
Dr. Zerhouni explained that the overall effort he envisages must involve not only the NIH but also other participants, including PIOs, professional societies, and physicians in practice. He emphasized his belief that discoveries in one disease area will lead to advances in many other areas. Research, he said, is not done "to people," but "with people," and is based on trust and advanced by collaboration.Discussion
The participants thanked Dr. Zerhouni for sharing his vision for the NIH and for demonstrating the NIH commitment to PIOs by participating in the meeting. They raised the following topics in discussion with him.Public Awareness of NIH
Participants suggested that most members of the public do not know the NIH exists or that it supports biomedical and behavioral research. Dr. Zerhouni described ongoing efforts to develop a communication plan for more effective information sharing with patients and the public. He noted that the NIH Web site is the most frequently visited Federal Internet site.Empowerment of PIOs
Participants commented that PIOs have extensive networks and could play important roles in NIH efforts to communicate with and educate the public. Dr. Zerhouni noted that his office is collaborating with the NIH Director's Council of Public Representatives (COPR) to create a Web site for the public. He emphasized the importance of disseminating evidence-based information and of obtaining feedback on the effectiveness of this dissemination.Community Organizations as Partners and Advocates in Research
Organizations were encouraged to reach out to communities and to involve them as true partners in clinical research and as advocates for the protection of human subjects.Industry-Supported Research on Rare Diseases
Participants lamented the lack of interest shown by drug companies in research on orphan diseases. Dr. Zerhouni expressed his wish that drug companies assume some societal responsibility for development of treatments for all diseases. He noted that a new understanding about complex biological systems is likely to create opportunities for research on multiple disorders, including orphan diseases, that may have common bases.NIH Actions to Support PIO Activities
The PIOs asked for NIH help in developing an infrastructure to foster cooperation, collaboration, and sharing of resources with one another and with the NIH. Dr. Zerhouni noted that development of clinical research materials across the NIH is part of the "Roadmap" effort.