Bethesda, Md—The Mark O. Hatfield Clinical Research Center at the National Institutes of Health (NIH), which opened to patients in April, is a technological marvel with a human heart. The Hatfield Center adjoins the Warren Grant Magnuson Clinical Center, which opened in 1953. These two buildings, plus an ambulatory care research facility, constitute the NIH Clinical Center. Among federal buildings, the Clinical Center is second in size only to the Pentagon. The $596 million Hatfield Center is named for the Republican senator from Oregon, a longtime champion of government support for biomedical research. Before retiring in 1997, Hatfield helped break ground for the building’s construction. The new Mark O. Hatfield Clinical Research Center, with its extensive patient care and laboratory facilities, will focus on translational research. (Photo credit: Duane Lempke, Sisson Studios, Inc) Four patient care wings house 242 inpatient beds and 90 day-hospital stations. Paired around two landscaped courtyards, the wings flank a 7-story glass-enclosed atrium, whose ground floor includes admitting and discharge areas and public services. Two of the patient wings stretch out into laboratory wings that command about one third of the center’s total space. Patient care units and laboratories occupy levels 1, 3, 5, and 7. Levels 2, 4, and 6 and a penthouse above level 7 house mechanical systems, offering workers walk-around room and full access to the floor below for maintenance and remodeling. Hatfield is the first NIH building to incorporate dedicated infrastructure levels. “It is designed to adapt to changes in medicine that have not yet been imagined,” says chief architect Robert Frasca. Two pedestrian bridges connect Hatfield to Magnuson. After the Hatfield building opens, about one third to half of Magnuson will be outfitted with new research laboratories and offices. Some services will remain in Magnuson; other areas will be mothballed pending future remodeling. A new entrance to the NIH campus will speed access to the hospital. Translational research Translational research The new center, like the old one, will focus on translational research, which aims to expand basic science findings into therapies and use clinical observation to guide further laboratory study, says John Gallin, MD, NIH Clinical Center director. Translational research Clinical Center staff includes 1300 physicians, dentists, and PhD researchers; 660 nurses; and 570 allied health care professionals. Salaries, equipment, supplies, and services brought the Clinical Center’s budget for FY 2004 to $331 million. Staff from the various branches of the NIH also see their clinical research patients in the Clinical Center. Translational research All Clinical Center patients are volunteers admitted for research protocols. Since 1953, more than 350 000 individuals have participated in Clinical Center protocols. About 84 000 remain active patients. In 2004, the Clinical Center logged 8600 admissions, 57 000 inpatient days, and 110 000 outpatient visits. Length of stay averages 8.5 days, more than double that of the typical community hospital. Some patients stay a year or longer. Translational research Some 1300 research protocols are in progress; about 300 more start each year. About 60% are completed or discontinued each year. Nearly half the studies involve clinical trials; 90% are phase 1 or 2 studies to assess safety and efficacy of new therapies or devices. Most of the rest, chiefly longitudinal studies, explore the natural history or pathogenesis of a disease. Most protocols last 3 to 5 years, but some patients are followed up for 20 years or longer. Translational research More patients with rare diseases receive care at the Clinical Center than at any other research center in the world, Gallin says. Some patients haveadvanced cancers or other illnesses that have not responded to standard treatment. Healthy volunteers participate in some studies. Patients receive care at no charge; US taxpayers pick up the tab. Translational research Gallin’s own research focuses on orphan diseases of neutrophils and phagocytes, including chronic granulomatous disease (CGD). His group follows 250 children with CGD, about half the nation’s total population with this disorder. The disease was once called “fatal granulomatous disease of childhood.” Today, thanks to prophylactic antibiotics and immune-enhancing therapy with interferon gamma, most individuals with CGD live to be adults, Gallin says. Many have had healthy children. The 7-story glass-enclosed atrium of the $596 million Hatfield Center is a soaring space flanked by four patient wings. (Photo credit: NIH/DHHS) Translational research Research on rare diseases can benefit public health, asserts David Henderson, MD, NIH deputy director for clinical care. For example, Clinical Center researchers have been following up patients with von Hippel-Lindau disease for more than 25 years. The disease spurs growth of tumors in the skin, brain, kidneys, and elsewhere. National Cancer Institute researchers collaborating with the Clinical Center group not only found the gene for von Hippel-Lindau, but also discovered that the gene is mutated in virtually all clear cell cancers of the kidney, the most common type of kidney cancer. Multifunction space Multifunction space The two clinical/research wings of the new building meet at a two-story crossroads designed to function like a town square, with multiple alcoves for meetings and conversation. Floating staircases and open walkways with nooks for chairs and couches allow individuals to see and be seen as they traverse the building. “We hope to foster both planned and chance encounters between clinical and basic science staff,” says Gallin. “We want to prompt ‘hallelujah’ moments, neat ideas people can test.” Multifunction space Basic patient rooms in Hatfield can be easily converted from a single to a double room or day-hospital station. Their ample size allows family stays and makes it easy to boost bed capacity if public health emergencies occur. The day-hospital stations allow patients to receive cancer chemotherapy and other treatments without staying overnight. Multifunction space A standard double room can also be outfitted with a vestibule to create an isolation or patient protective room. “We can treat patients with influenza, severe acute respiratory syndrome [SARS], anthrax, or smallpox in this building, and do it safely,” Gallin says. Multifunction space Flexibility in managing the infrastructure permits study of virtually any disease, Henderson says: “When there are huge science questions that have to be answered, issues of diagnosis, management, and prevention of the crisis du jour, we can do it here.” Addressing patients’ needs Addressing patients’ needs “Being a patient here differs from being one in a general hospital,” says Clare Hastings, PhD, RN, NIH chief of nursing and patient care services. “Our patients may have a disease, but many are not ill.” Addressing patients’ needs A patient advisory group met quarterly with Gallin throughout the planning process. The input of this group helped prompt such features as large, low windows in patient rooms to allow patients lying in bed to see courtyards below, adjustable-height shower heads to accommodate patients with intravenous catheters, Internet access at every bedside (patients will receive a disposable keyboard and mouse costing only $15), a library, and an exercise room. At cancer patients’ request, the garage is speed bump–free. The Clinical Center[[rsquo]]s laboratories and patient care units will help researchers expand basic science discoveries into therapies; clinical observation, in turn, will help guide further basic research. (Photo credit: NIH/DHHS) Addressing patients’ needs An international hospital, the Clinical Center treated speakers of 40 different languages last year. Facilities include a multidenominational chapel and a separate room where Muslims can lay down prayer rugs. An ablution area for washing before Muslim prayers shimmers with iridescent multicolored mosaic tiles. Addressing patients’ needs In the 22-bed children’s unit, unique light fixtures embedded with colored marbles at each doorway enable even young children to readily recognize their rooms. Paw prints or stars on the ceilings amuse and comfort those lying in bed. The Clinical Center runs its own school from kindergarten through grade 12 and even offers pet therapy. Addressing patients’ needs Some young patients may stay with their families at the nearby 59-room Children’s Inn. Families of adult and young patients can stay at the 34-room Edmond J. Safra Family Lodge, scheduled to open later this month. A “secret” hospital? A “secret” hospital? Despite serving patients from all 50 states and some foreign countries, the Clinical Center lacks visibility, Gallin maintains. “North of Philadelphia and south of Richmond, many individuals, even professionals, don’t know NIH has a hospital,” he says. A “secret” hospital? “We encourage primary care physicians to refer their difficult patients here, the ones for whom treatment is not obvious,” he says. But the Clinical Center “won’t steal patients,” he adds. The center aims to partner with physicians to coordinate care of patients who participate in research studies. A “secret” hospital? Fifteen years ago, the NIH required physician referrals for admissions. But so many patients referred themselves, Gallin says, that the NIH had to change its policy. A “secret” hospital? The NIH still sends periodic lists of active studies to all physicians in the American Medical Association’s Masterfile. But physicians and patients increasingly use a search engine at http://clinicaltrials.gov/. Entering a symptom or diagnosis brings up a list of all protocols at the NIH and nationwide. Patients can e-mail the patient recruitment and referral office to express interest; last year 20% of the Clinical Center’s patients came through this office. One third reported they had no primary care physician. The center helped them find one. A “secret” hospital? “Every physician in this country has patients who should participate in clinical research studies,” Gallin says. Currently about 85% of children with cancer, but only 15% of adults, are enrolled in such studies. “The children have good surrogates: their parents,” he says. Patients enrolled in studies “not only get better clinical care, but also gain hope,” he asserts. A “secret” hospital? Susan Butler of Alexandria, Va, a member of the center’s patient advisory board, was diagnosed with advanced primary breast and ovarian cancer in 1995, at age 51. After undergoing surgery and radiation, she received a combination of three high-dose anticancer medications while participating in a Clinical Center protocol in the mid-1990s. She remains well today. A “secret” hospital? “Patients at the Clinical Center find it strengthening and comforting to be surrounded by others in the same situation. You feel you can make a contribution to medicine and to lives that come after you,” Butler says. A “secret” hospital? “I have had my miracle,” she adds. “I have lived to see my grandchildren.” For more information For more information NIH Clinical Center: http://www.cc.nih.gov/ For more information Mark O. Hatfield Clinical Research Center: http://www.cc.nih.gov/ccc/crc/ For more information How to refer a patient and for views of the Hatfield Center: http://www.cc.nih.gov/researchers/referring.shtml For more information Building Ten at Fifty, an illustrated history of Clinical Center research by science writer Pat McNees. For a free copy, write to Clinical Center Communications, National Institutes of Health, MSC 7511, Bethesda, MD 20892-7511, or send an e-mail email@example.com, or call (301) 496-2563.
JAMA – American Medical Association
Published: May 4, 2005
Keywords: child,cancer,patient referral