"It is extremely gratifying that this broadly experienced and diverse group of interested citizens has agreed to help NIH enlarge its engagement with the general public," Dr. Varmus said. "The NIH is a public institution and our research is having a great impact on the lives of all Americans. The COPR will help us enrich our already extensive interactions with the public by bringing us a greater diversity of perspectives and ideas, and by helping us ensure that more Americans understand the NIH and its work."
The members are (in alphabetical order):
The group selected for the initial COPR has multicultural and geographical diversity, includes men and women from their 20's to their 70's, has personal and professional experience with a broad span of disease conditions and physical and mental disabilities, and includes many who work with and understand the problems of the medically underserved. Among the members are patients, patient advocates, caretakers, and volunteers; scientists and health care professionals; students of science, law, and public health; professional communicators of health, medicine, and science; and individuals in public service, academia, or professional societies involving the medical field.
Members have been appointed to terms initially running from April 21, 1999, to March 31, 2000. Each member has agreed to subordinate his or her individual interest or involvement in specific diseases or programs and to come to the table ready to think globally about broad, cross-cutting matters of importance to the NIH and society.
The first COPR meeting will be April 21, 1999, in Bldg. 31C, Conference Room 10, on the NIH campus in Bethesda, Maryland, starting at 8:30 a.m. The meeting is open to the public, subject to space available, and will be broadcast on the Internet for public viewing. Information on Internet access is available at http://videocast.nih.gov.
Topics for the first meeting include: models of public participation in NIH activities, patient access to clinical trials, the clinical trials database required by the FDA Modernization Act of 1997, and health disparities among various populations. A meeting agenda is posted on the Internet at http://www.nih.gov/welcome/publicliaison/get-involved/copr/042199/agenda.html.
Establishment of the COPR to facilitate interaction between NIH and the public was among the recommendations of the 1998 Institute of Medicine report, "Scientific Opportunities and Public Needs." NIH has already implemented other recommendations of the IOM report, including establishing an Office of Public Liaison in each Institute and in the Office of the Director.
Selection of the first COPR members followed a two-month, nationwide, public call for nominations (published in the Federal Register on November 19, 1998) that attracted well over 200 applications. The selection process was designed with advice from a group of 23 members of the public who met at NIH in September 1998 to develop eligibility criteria for nominees. These advisors also identified characteristics important for ensuring that the COPR reflects the breadth and diversity of publics interested in the NIH, recommended that NIH involve the public in review of the applications, and said the NIH Director should be the selecting official. Dr. Varmus made the final selection after extensive and deliberative review.
Dr. Varmus has invited applicants not selected for the first COPR to become "COPR Associates," and to serve as links between the NIH and the public. COPR Associates might be asked to comment or advise on COPR agenda items or to serve in the future on COPR or other NIH committees.
The COPR will meet approximately twice a year, usually at NIH. In future years, members will serve overlapping terms of up to three years, as do members of other NIH advisory committees.
Attachment: Biographies of First NIH Director's Council of Public Representatives Members