T H E   N I H    C A T A L Y S T      M A Y   –  J U N E  1999

NIH SEES SILVER LINING IN COPR
COPR participants bid NIH director Harold Varmus adieu at meeting's end.

From the outset, NIH Director Harold Varmus gently hinted that creating a new advisory group of public representatives was not exactly his idea. But in opening comments at the first meeting of the Committee of Public Representatives (COPR, or "Copper") on April 21, Varmus indicated he now embraces the new committee and plans to test its mettle.

The idea for COPR had its origins in an Institute of Medicine (IOM) report that capped a congressionally mandated study of how NIH sets its research priorities and interacts with the public. Two or three years ago, Varmus said, Congress was contemplating major increases in NIH’s budget but wanted to be sure that this largess was well-spent from all points of view. Doubting that word about the treasures of NIH research was indeed reaching the ears of their constituents, Congress directed the IOM to conduct the study.

For its part, the IOM produced a report in which lay the seeds of COPR, Varmus said. Despite the presence of public members on advisory panels to the NIH director and to the institutes and centers—and despite the steady presence of disease interest groups at the NIH campus—the IOM deemed NIH’s interaction with the public insufficient.

An ad hoc group appointed from a list of people familiar with NIH met with Varmus in September. The group recommended that the citizens’ committee that would be named COPR include a broad mix of members—patients, scientists, administrators, advocates—and that the NIH director have the last word on selection.

To counteract what seemed at first like a prescription for factionalism, Varmus set stringent selection criteria, including the ability to think globally, exercise leadership, analyze problems, communicate well, and work effectively in a group. An ad was posted in the Federal Register and e-mails went out to all of the institutes’ contacts in every constituency group. Other federal agencies helped spread the word, and special attention was paid to recruiting members representative of minority groups. "The word got out there," says NIH communications director, Anne Thomas, charged with coordinating COPR’s activities. The ads and letters drew 250 applications, many of them glittering.

In fact, Varmus was so impressed with the quality of the applications that picking the final group of 20 was very difficult. Unwilling to cut the remaining applicants loose, Varmus invited all 230 to become "COPR Associates." He told the COPR members that he envisions the "Associates" as a place to which COPR members might "retire" and from which new members might be drawn. He said he expects to let the Associates group largely run itself, serving as a conduit to and from the general public, much like the official group. Thomas says she has already had requests from institutes for help and advice from COPR associates.

The credentials of the COPR proper shine like a new penny. The members went around the table, introducing themselves to one another (see below) and the assorted onlookers that made up the audience to this open meeting. Some had prior experience serving on NIH advisory groups; some had been involved in NIH-funded research—either as principal investigators or clinical trial participants; some were afflicted with the disease that dominated their advocacy work; none was a stranger to the complexity of competing and overlapping interests in health research policy and funding; and some made a point of affirming their willingness to cast a wider net of concern than their particular bailiwick during their COPR service.

Varmus told the group that serving on the committee would be no free ride. In addition to meetings twice a year, he expects COPR to have a constant dialogue with NIH, either through him or through Thomas. He expects COPR members to serve on advisory and review panels, conduct studies and analyses, lead the COPR associates, and evaluate how well NIH manages its relations with the public and constituency groups.

Just as he has put his Advisory Committee to the Director to work on technical and scientific issues, Varmus said, COPR members can expect to roll up their shirtsleeves on issues that pertain to the public, to patient populations, and public health. Examples include ethical issues, privacy of medical information, and embryo research, Varmus said.

Underscoring his intention to mine the COPR, Varmus asked the group to stipulate those activities they would want to involve themselves in "in a more intense way" and noted that the next COPR meeting would likely include a report back to the group of discussions arising during a "budget retreat" slated for June, as well as address the protection of research subjects, complementary and alternative medicine, and how to expand access to the "remarkable resources of the Internet and make the whole nation interactive." Additional items suggested by COPR members included technology transfer, the Human Genome Project, and the logistics and ethics of research conducted abroad—especially vaccine research.

THE COPR PLATE

Debra Lappin (Colorado), a lawyer and long-time Arthritis Foundation officer, policymaker, and advocate instrumental in crafting the National Arthritis Action Plan, expressed her desire that COPR have "input into the research priority-setting process."

Isaac Montoya (Texas), think tank president, university professor, and behavioral scientist with a focus on health services research to improve the health status of underserved populations, cited "migrant workers and drug abusers" among his special concerns.

Rosemary Quigley (Michigan), whose work in research ethics has served an NIH-funded project on genome technology and reproduction, as well as the AMA and her home state, described herself as the "20-something on the panel" whose experience as a cystic fibrosis patient and research volunteer would inform her efforts to "balance the cult of the cure with an understanding of what it means to have a chronic genetic illness."

Theodore Castele (Ohio), self-described "70-something on the panel," is a radiologist and health reporter ("Dr. Ted") for a Cleveland television station who said he looked forward to being able to tell the public about the "great things going on at NIH."

Robin Chin (Rhode Island), a pharmacist, HIV/AIDS advocate, and member of the National Asian Women’s Health Organization with personal and family experiences of breast cancer and diabetes, said one of her primary goals is to "eliminate health disparities among minorities."

Barbara Lackritz (Missouri), a speech pathologist whose Internet activities maintaining cancer support lists put her in touch with more than 30,000 patients and care givers, noted that her own illness and those of family members contribute to the "broad-based perspective" she brings to COPR.

Michael Anderson (Oklahoma), a minister and cofounder of the Presbyterian Health Foundation whose chief interests are medical education and research and biotechnology transfer, spoke of his own desire to "apply science to human enterprise" and noted that the Human Genome Project represents a "significant ethical opportunity."

Melanie Dreher (Iowa), a nursing school dean and anthropologist, counted rural health, especially among the elderly and isolated, chronic illness, and the effect of global migration on health among her professional interests and observed that as a member of an NIH study section and a clinical trial participant, she understands "how important NIH is to the public and how NIH’s strength derives from the public."

Luz Claudio (New York), who described herself as the "basic science nerd of the group," is a neuroscientist at the Mount Sinai School of Medicine whose research includes environmental effects on the brain and whose community outreach activities are focused on training programs for disadvantaged and minority youth.

Douglas Yee (Hawaii), a financial advisor and the founder of the research committee of the American Lung Association of Hawaii, whose business acumen has been applied to reducing health disparities in his state, expressed his enthusiasm for working cooperatively with fellow panelists.

Vicki Kalabokes (California), cochair of the Coalition of Patient Advocates for Skin Disease Research, helped promote the creation of the six NIAMS skin disease core centers but said that her interests lie in nearly every disease and in promoting the "good of the whole."

Roland McFarland (California), a television programming analyst and representative of the Los Angeles and Hollywood Entertainment Council, told the group that the directors’, screenwriters’, actors’, and producers’ guilds had just formed a council on public health issues and "will work with NIH to get the word out."

Thomas Vaalburg (Michigan), a former health care executive involved in the development and marketing of medical devices, pointed to cancer and bipolar disorder as two areas of special interest to him and pinpointed his goal as "to serve the underserved."

Joan Lancaster (Tennessee), director of government relations at the Johnson City Medical Center and involved in the planning and development of a Regional Med-Tech Center, placed her primary concern in access to health care for rural America, especially among the elderly.

Pam Fernandes (Massachusetts), a member of the first team of blind marathon runners in the United States who ran in the Boston Marathon a week before the COPR meeting, credited biomedical research with her "being here today" and emphasized the need for public education about such matters as the role of exercise in controlling diabetes.

Robert Roehr (Washington, D.C.), a medical reporter who has written extensively on HIV/AIDS, tuberculosis, vaccine development, genetics, and other medical topics, as well as meetings at NIH and other agencies, presented his goal as "making NIH research available at the patient level."

Lydia Lewis (Illinois), executive director of the National Depressive and Manic-Depressive Association, with 20 million constituents, and a member of the NIH task force overseeing a clinical trial of St. John’s wort, said she wanted NIH to focus its priorities "where there is the most promise of therapy and cure," as well as to be more sensitive to the way illness can be stigmatizing.

Maurice Rabb (Illinois), an ophthalmologist and clinical investigator who served on the NEI Advisory Council and NIH Sickle Cell Disease Advisory Council, emphasized the need to recruit and retain minority faculty and assigned himself the task of catalyzing interactions among NIH, medical organizations, and outreach communities.

David Frohnmayer (Oregon), president of the University of Oregon who spoke via conference call, extolled NIH as an "international treasure" and told the group of the loss of family members to Fanconi’s anemia and his desire to "understand molecular medicine and gene therapy."

Mary desVignes-Kendrick (Texas), a pediatrician and director of Houston’s Health and Human Services department, who was unable to attend the first meeting, has cited narrowing the outcome disparities between ethnic groups as a major objective.

 

 

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