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New Advisory Group Meets for First Time
COPR Provides New Forum for Interacting with Public

By Carla Garnett

Photos by Ernie Branson

On the Front Page...

Less than a year after considering ways to add more public input and participation to the agency's activities, NIH director Dr. Harold Varmus convened the first meeting of the newly formed Council of Public Representatives (COPR, pronounced "copper") on Apr. 21. On the director's fast track to implementation since last July, COPR went from conception to fruition in fewer than 10 months. Ideally, the council will provide NIH with 20 more ambassadors to and from U.S. communities, groups and individuals who may not be familiar with the agency, its mission and the fruits of its research investment.

Continued...

"This council should have two functions that operate in differing directions," Varmus explained to COPR members, in opening remarks at the meeting. "On the one hand, the group should have a role in bringing NIH to the public. It should be a vehicle for transmitting NIH's views, activities and aspirations to the general public and to specialized constituencies. Also, you should be bringing public views to NIH to help improve our accountability by looking at the way we do things, and advising us of the appropriateness of the actions we take."

NIH director Dr. Harold Varmus (second from l) convenes the first meeting of new advisory group.

Who COPR Is

The 20 inaugural COPR members were selected by Varmus from close to 250 applications, using criteria recommended by participants in a Sept. 23, 1998, meeting to help frame plans for the new council. Ranging in age from "20 something" to "70 something," members hail from various regions of the country, represent ethnically and racially diverse communities and are involved in a wide array of vocations from TV executive to financial advisor to church pastor.

Dr. Michael Anderson, senior minister of a Presbyterian church in Oklahoma City, chats with Dr. Melanie Dreher, a nurse and medical anthropologist from Iowa City, Iowa. Biographies of all COPR members are available at http://www.nih.gov/welcome/publicliaison/get-involved/copr/members.html.

Some members — including former NIH grantee Dr. Maurice Rabb of Chicago, who was once a member of NEI's advisory council — have more than a basic familiarity with NIH, having previously served on committees or task forces for an NIH institute or been involved with one of the hundreds of medical and research advocacy organizations that interact regularly with NIH. Similar to Debra Lappin — an Englewood, Colo., attorney whose crippling arthritis forced her to give up a partnership in private practice — many are survivors (or family members of survivors) of illnesses being studied by NIH and its grantee institutions. Several COPR members work as physicians, nurses or other members of healthcare delivery teams.

Journalist Bob Roehr (l), a Washington, D.C., correspondent for the Bay Area Reporter as well as several other gay and lesbian publications, and Dr. Maurice Rabb, an ophthalmologist from Chicago, gather before the first meeting of the COPR.

One prerequisite unites those in the new group, however: All 20 have agreed to put aside their individual interests to help NIH address universally important issues of research ethics, administration and other policy matters. Eighteen COPR members were able to attend the initial meeting and orientation session.

Introducing herself to the other COPR members, Vicki Kalabokes, a health educator from San Rafael, Calif., who also serves as chief executive officer of the National Alopecia Areata Foundation, put succinctly what it is hoped that all COPR members will be able to do. Noting that she has been extremely active in dozens of different groups working for a number of related causes, she said, "What I really enjoy doing is getting people to coalesce around an issue and not look at their own specific area, but to look at what the good of the whole is and realize how much more productive we are when we are working together."

Dr. Luz Claudio, a basic scientist studying neurobiology and environmental medicine at Mt. Sinai School of Medicine in New York City, shares a moment with Douglas Yee, a financial advisor with Morgan Stanley Dean Witter in Honolulu.

The 230 or so applicants who were not selected for the first COPR were not dismissed; they were asked to become "COPR associates," who Varmus said will be regularly apprised of the council's activities, and who will provide a constant source for replenishing COPR when members' staggered terms expire.

"In short," he said of the associates, "I see this as a vehicle by which NIH can do what the Sept. 23 group suggested — get the word about NIH activities out more forcefully into the community."

What COPR Will Do

Similar to the 33-year-old advisory committee to the NIH director (ACD), which meets in June and December each year and includes mainly research professionals from the academic community and private industry, COPR will have the ear of NIH's top decisionmakers. Although the ACD and COPR may have overlapping activities at times, Varmus admitted, COPR is different from the ACD in at least one way: the new group will provide opportunities for interaction by more folks outside the medical and scientific arenas.

Roehr greets Lydia Lewis, a patient advocate from Chicago who works to promote awareness of manic depression and other mental health problems. She also serves on the NIMH/NCCAM task force that is overseeing a clinical trial of St. John's wort.

"When I came to NIH nearly 6 years ago," he said, "I told my initial advisory board that this is not a free ride, that it might be something to add to your CV [curriculum vitae], but that I was going to expect real work."

Varmus thanked COPR members for volunteering to meet twice yearly, and warned them that at times they would be asked to take on "specific, time-consuming and labor-intensive" tasks, and that he expected "constant dialogue throughout the year." He also said he hopes each member would "always be receptive to the idea of being available for consultation."

Rosemary Quigley, a graduate student, cystic fibrosis patient and self-described "20-something" COPR member from Ann Arbor, Mich., meets television medical news show host Theodore "Dr. Ted" Castele, a physician from Cleveland, who joked that he is "70-something" and represents "Generation Z."

Varmus briefly outlined a few specific examples of duties some may be asked to tackle: attending the first trans-institute budget retreat for 2 days this June; participating in NIH's peer review oversight group; sitting in on an IC director's regular performance review session; contributing ideas to help NIH respond to the Government Performance and Results Act; or helping devise and steer activities of COPR associates.

Getting to Know NIH

In the course of the all-day public meeting (which was preceded by an NIH primer session the day before that Varmus said was intended to help explain such uniquely agency or federal concepts as "intramural versus extramural" and "budget versus appropriation"), COPR members also heard from four of NIH's 25 institute and center directors about how their organizations currently interact with the public. Such director's presentations will continue in future COPR meetings, Varmus explained, until all ICs have been introduced and discussed. Presenting at this session were NIDCD's Dr. James Battey, NIAMS's Dr. Steve Katz, NINDS's Dr. Gerald Fischbach and NHLBI's Dr. Claude Lenfant.

Two topical issues were also examined: Dr. Pearl O'Rourke of NIH's Office of Science Policy discussed current barriers to recruiting patients to participate in clinical trials and solicited ideas on possible ways to eliminate such barriers, and OSP's Robin Kawazoe and NLM's Dr. Alexa McCray gave progress reports on the development of the clinical trials database mandated by the FY 1997 FDA Modernization Act.

COPR member Pam Fernandes (l) of Needham, Mass., a champion tandem bike racer who has diabetes and is legally blind, jokes with fellow cycling enthusiast Anne Thomas, NIH associate director for communications.

During the afternoon, the meeting agenda addressed health disparities. Dr. John Ruffin, NIH associate director for research on minority health, moderated the session that included presentations by former NCI researcher Dr. Ed Sondik, now at the Centers for Disease Control and Prevention's National Center for Health Statistics, who gave an epidemiological overview; Dr. Norman Anderson, NIH associate director for behavioral and social sciences research, who discussed socioeconomic status and health and disease; Dr. Otis Brawley, director of NCI's Office of Special Populations Research, who described the unequal burden of cancer in minority communities; and Dr. Michael Gottesman, NIH deputy director for intramural research, who talked about training minority scientists and development of the NIH Academy that would help NIH provide such training. COPR will meet again in October.


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