More Doors, Fewer Walls
By Carla Garnett
On the Front Page...
Eighteen years ago, Theresa Schwantes of South Milwaukee, Wisc., experienced a medical crisis. Her newborn daughter Brianne was diagnosed with a brittle bone disorder called osteogenesis imperfecta. Schwantes was advised that her daughter could not possibly live long with the disorder. One of the best options, she was told, would be to put her in an institution. Schwantes refused. Instead, the family sought help from NIH. After years of clinical studies, the happy mom now reports, Brianne is a freshman this fall at American University, considering a career in law and politics.
Patty Delaney of D.C. works at the Food and Drug Administration. When she was diagnosed 10 years ago with stage IV Hodgkin's disease, she was as scared and in need of reliable guidance as anyone else -- notwithstanding a general familiarity with medical research. She, too, sought assistance from NIH.
Bradley Margus of Boca Raton, Fl., described himself as "just another businessman until about 4 years ago." That's when his two sons were diagnosed with ataxia telangiectasia (A-T), a very rare disease "with a name that's hard to pronounce." Now, he has more than a vague idea about NIH, and he finds himself president and executive director of the A-T Children's Project.
Schwantes, Delaney and Margus were three of the 24 individuals invited by NIH Sept. 23 to discuss "Enhancing Public Participation in NIH Activities." The all-day meeting was spurred by a 5-month independent study of NIH requested by Congress and conducted by the Institute of Medicine (IOM), National Academy of Sciences. IOM reported its study results to Congress this past July; it made 12 recommendations -- 9 to NIH and 3 to Congress -- on how to improve the way the agency sets its priorities in funding medical research. Among the report's recommendations were these two: NIH should establish an Office of Public Liaison (OPL) within the director's office and within each institute to "document their public outreach, input and response mechanisms."
NIH should also establish a director's Council of Public Representatives (COPR, pronounced "copper") "to facilitate interactions between NIH and the general public."
Public Input Sought
Immediately getting into the spirit of seeking more public input on agency matters, NIH director Dr. Harold Varmus convened the Sept. 23 meeting to collect ideas and suggestions from a broad spectrum of individuals on potential functions and structure of OPL and COPR, and on methods of selecting future COPR members. First, though, he wanted to hear from the meeting participants about themselves.
"I'm a farmer's wife from Illinois," said Mary Kaye Richter of Mascoutah, Ill., "and I drive a real mean tractor." Executive director of the National Foundation for Ectodermal Dysplasias, Richter described briefly her 17-year association with NIH and how her family has dealt with rearing a child with a rare disorder. "I used to explain to people," she joked, "that I have three children -- a son, a daughter and a special order. My son has been part of two NIH clinical trials and I want you all to know that I am passionate about NIH."
Richter and the other meeting participants hailed from across the nation. They are business people, homemakers, lawyers, educators, health care providers and judges. Many are also survivors or family members of survivors of life-threatening and chronic disorders. Some are what Margus called "professional public people," those who -- usually due to firsthand experience with both medical crises and the benefits of advocacy -- are now more savvy than they ever imagined being about getting things accomplished in Washington.
All of the participants, however, came with at least two things in common: some knowledge of NIH, and a keen desire that everyone else in the country have at least a basic familiarity with the nation's leading supporter of medical research. But how to make that happen? What do Jane and John Q. Public in Middle America do when told their child has an ailment few have ever heard of, much less treated? Medical schools and facilities in every state in the nation receive NIH funds for research, but do people make the connection between their tax dollars and the availability of NIH medical research and information?
Spreading the Word
"NIH is the best kept secret in the U.S.," remarked Dr. Mary Lou de Leon Siantz of Baylor College of Medicine in Texas, suggesting that NIH is far less known to most Americans than it should be. Several others at the table nodded in agreement. The prevailing sentiment was that NIH ought to be more fully appreciated and better recognized than it is.
Anne Thomas, NIH associate director for communications, gave the participants a primer on how NIH tells the nation about its mission, its work and about health and science in general. Every institute has a public information office devoted to passing along its individual health and research messages to the public that funds it, she pointed out. "Bringing new research findings and advances to the public" and "providing the public with health messages based in science" are the two main goals of NIH's communication efforts, she said.
Aside from the issue of NIH becoming more familiar to the nation's heartland, most of the participants also championed a deeper and broader role for citizens in NIH decision making. How can the public learn more about the way NIH decides how much funding should be devoted to individual diseases? Can and should the public have more of a voice in these priority-setting discussions? At issue was a more recently publicized perception among some in Congress and in several health advocacy groups that diseases, disorders and populations with the loudest public outcry receive the largest portion of research dollars from NIH. Why, for example, do AIDS and breast cancer appear to receive more NIH funding than other disorders that are as life-threatening, but may have less well-known advocacy groups?
Putting Passion into Practice?
The IOM report suggests that establishing an advisory group -- the COPR -- that has the ear of the NIH director may be one way "to elevate public input into the priority-setting process to the highest level of NIH in a systematic and periodic manner..."
"The assumption seems to be that if the public were more involved in the priority setting, then the outcome would be different," said meeting participant Dr. David Rosenbloom, director of Boston's Join Together organization, which advocates a reduction in substance abuse and gun violence. "Perhaps there is some way to put that assumption to the test."
Another voice in the discussion, Alan Brownstein, president and CEO of the American Liver Foundation, acknowledged, "For each person around this table, there is a story to be told, but" NIH must begin to "address this fundamental fairness issue."
To provide examples of how the public is already involved in many levels of NIH priority setting, four institute directors -- NIAID's Dr. Anthony Fauci, NIEHS's Dr. Kenneth Olden, NIDA's Dr. Alan Leshner and NCI's Dr. Richard Klausner -- gave brief presentations on how citizens give input to their organizations.
Describing how representatives of the public already have a voice in many advisory boards and committees of most institutes, Klausner encouraged a move from "passion-based advocacy to information-based advocacy."
"The remarkable success of NIH is due to the fact that this is where science touches people," Brownstein countered. "It is really not time to abandon passion. It's important to develop a partnership of business, science and the public to manage that passion with better outcomes."
Making Ideas Concrete
That perhaps is where COPR steps in. But what exactly would COPR do? Varmus asked, seeking ideas for specific tasks for the proposed council.
"Help the director interpret information from the public's point of view," suggested Debra Lappin, a lawyer who said she stopped practicing 10 years ago due to her debilitating bout with arthritis. She now chairs the Arthritis Foundation in Englewood, Colo.
Emphasizing the need to increase NIH's accountability to the public, Dr. Steve McConnell, vice president for public policy of the Alzheimer's Association in Washington, D.C., proposed three activities for COPR: Establish criteria for evaluating NIH performance, review each IC for how well it gets its message out and help review NIH against the performance criteria.
Varmus gave the participants more food for thought: Who should sit on the COPR, and how should NIH go about finding these people?
COPR should be diverse, bringing together not only different races of people, but also those with varied education and income levels, noted Delaney. Schwantes said people with a stake in their own communities -- especially within small towns -- would be assets to COPR, because their participation would provide built-in, word-of-mouth publicity for NIH and for the council's work. Dr. Gerard Buckley, an associate dean at the National Technical Institute for the Deaf, suggested "coalition-minded individuals," who know how to build teams and organize large efforts. McConnell described three kinds of people he'd like to see on COPR: "Big-picture thinkers" with analytic ability who can understand both the science and the public's view, "people who have a personal stake in" COPR, and "those with credibility to the outside world."
Other considerations for potential council members included perhaps tapping healthcare providers, members of the news media and community outreach experts, and assuring a good geographic representation of the country.
"I just hope that we'll have folks leaving their disorders at the door," Richter stressed, explaining that COPR would not work if it were composed of people concerned only with lobbying for more research money for their individual causes.
Only the Beginning
The individual offices of public liaison recommended in the IOM report have already been identified in most ICs, Varmus reported. As suggested by IOM, the OPLs' three-fold purpose is to provide an easily identifiable contact point for people with an interest or concern, offer a place of referral where Congress can direct their constituents and "conduct an active program of outreach to and interaction with constituency groups."
Participant Robert Abendroth, a lawyer whose wife died of Lou Gehrig's disease and whose children and grandchildren remain at risk for the disorder, questioned the need for changing NIH's current system of liaison with the public.
"I've always experienced outstanding assistance from the public liaison office at the neurology institute," he said, suggesting that revamping a system already in place, and functioning well, would be counterproductive.
"This is just the beginning of the discussion," Varmus concluded. "It gives us a starting point. For the most part, it is a measure of NIH's success that we are having this meeting. NIH's success has invited additional scrutiny. The IOM report has given us recommendations -- not mandates -- to consider. We're just feeling our way here. All of us are committed, however, to making NIH seem less like a wall and more like a series of doors."
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