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• W2012898180 abstract "The University of Pittsburgh combined a multidisciplinary team of lupus experts, its successful basic and clinical lupus research programs, and one of the most extensive lupus patient registries in the world to create the Lupus Center of Excellence, a center dedicated to integrated patient care and clinical translational research. The current structure of academic medical institutions is generally based on traditional segregation of departments and divisions according to clinical subspecialties. We describe here our experience in conceptualization, creation, and growth of the Lupus Center of Excellence (LUCE) as an alternative model. LUCE has been our response to the increasing challenges confronted by lupus patients who require complex and highly specialized care that is often fragmented or not available to them and who are in desperate need of rapid research discoveries in genetics, pathogenesis, biomarkers, and approved therapeutics. Our experience may inspire other efforts to restructure patient care and the clinical-translational research enterprise. Lupus patient care and research are traditionally housed within divisions of rheumatology in departments of medicine. However, we revisited this arrangement and questioned whether an alternative model might hold a higher likelihood of future success. We concluded that lupus patient care and research should be affiliated with the division of rheumatology; however, the traditional relationship is no longer the most beneficial for lupus patients, physicians, scientists, and trainees. Several factors contributed to this conclusion. First, some lupus-related programs and activities involve rheumatologists, but many do not because of the multidisciplinary clinical and research needs of patients with this disease. Second, a division chief may have potential conflicts of interest regarding space and resource allocation, philanthropic efforts and targets, faculty and staff recruitment, and other significant activities essential to unencumbered development and success of a disease-specific center. Third, although divisions are the traditional structural units of American medicine, they are also potential silos and are not the most effective structure for integrated multidisciplinary patient care and research. The term “division” itself suggests that something is being divided whereas “center” suggests integration to achieve a common goal. Lupus patients are also compromised when viewed as suffering from a musculoskeletal condition or a form of arthritis, a generic term that may connote a disorder of the elderly that has an impact on quality of living but rarely triggers catastrophic events and fatality. Progress in lupus research may also suffer by residing primarily within the traditional domain of rheumatologists and immunologists, frequently relying on casual collaborations with colleagues in other relevant disciplines who are not necessarily focused on lupus as a scientific mission. This failure to appreciate fully the clinical complexity and scientific intrigue of lupus can adversely influence not only patient care and scientific progress, but also career choices by trainees and funding allocations. Within the realm of rheumatic diseases, we recognized lupus as an ideal focus for a single-disease center for several reasons. First, there is arguably no disease that is more clinically complex and challenging than lupus, which routinely affects all organ systems. This requirement for ultraspecialized yet broad clinical expertise suggested that a “one-stop-shopping” enterprise would be enthusiastically embraced by patients and their families. Second, lupus as the prototypic systemic autoimmune disease presents a mystery that spans numerous scientific disciplines. Although immunology is commonly recognized as a primary research focus in the lupus field, this potentially narrow investigative window needs to be balanced with complementary efforts in vascular biology, genetics, neuroscience, drug discovery, and other disciplines that may hold answers to the myriad scientific challenges of lupus. Third, clinical-translational discoveries generated by lupus investigation are likely to have a broad impact on our understanding of other disorders that involve gender inequity, minority health, atherosclerosis, coagulopathies, stroke, nephritis, and the many other manifestations of lupus. Not all diseases are amenable to this approach and every institution may not be positioned to create a center focused on a particular disease. There were several key ingredients to creating LUCE. First, successful basic and clinical lupus research programs were already in place. Second, one of the most extensive lupus patient registries in the world had been started and maintained during the preceding 20 years. Third, we were able to capitalize on the presence of Magee-Womens Hospital (MWH) of University of Pittsburgh Medical Center, a world-class center for both women's health and comprehensive medical and surgical care, and one of the first hospitals to be recognized as a National Center of Excellence in Women's Health by the US Department of Health and Human Services. Fourth, an extensive and dedicated network of lupus patients and their families in western Pennsylvania was the catalyst for creation of the LUCE foundation and its advisory board. Fifth, an intellectual property portfolio had been established, suggesting that future royalties could potentially support research in the center. These 5 key ingredients catalyzed our initial efforts to explore an alternative model. LUCE was established in 2001 with a single mission: to accelerate discovery of a cure for Lupus. According to the LUCE mission statement, this would be accomplished “by supporting and uniquely serving a cooperative, diverse, and focused group of outstanding physicians and researchers to allow free expression of their scientific and clinical skills.” LUCE currently consists of 2 physical operations. The Lupus Research Laboratories are located in the Thomas E. Starzl Biomedical Science Tower. The Patient Care and Translational Research Center, located on the first floor of Magee-Womens Hospital, consists of approximately 6,000 sq ft of space that houses a multidisciplinary team of lupus experts with experience in rheumatology, cardiology, nephrology, dermatology, endocrinology, clinical psychology, neurology/pain management, and complementary medicine. This facility also contains the Lupus Biomedical Informatics Center, the Lupus Clinical Trials Consortium, and the Lupus BioGrid, an electronic database created as a spin-off of the CaBIG program of the National Cancer Institute, and developed in collaboration with colleagues in the department of biomedical informatics at the University of Pittsburgh. Other subspecialties in close proximity include high-risk obstetrics, internal medicine, gastroenterology, and pulmonology. LUCE programs and operations involve numerous schools, departments, and divisions at the University of Pittsburgh, and these collaborations are rapidly expanding. There are several elements essential to the success of this operation. First, the subspecialists in LUCE have specific interest and expertise in lupus and are dedicated to the mission of the center. Second, the majority of physicians who care for lupus patients at the center are also scientific investigators. The result is a highly efficient and synergistic approach to integrating clinical effort with research effort, particularly when physicians are surrounded by a clinical staff specialized in lupus patient care and clinical research. Third, an expert team of professional staff—including clinical research coordinators, recruitment specialists, data entry registrars, statisticians, and others—work directly with the physicians who provide clinical care for the patients. Fourth, LUCE faculty have maintained all other responsibilities as members of the division of rheumatology, and participate in the inpatient consult service, rheumatology fellowship training, rheumatology grand rounds, journal club, other didactic conferences, and division faculty meetings. However, patient care, research, finances, marketing, and development activities report to the chair of the department of medicine. This structure provides essential functional integration with, but administrative autonomy from, the division of rheumatology. In the current fiscal environment, even in academic medical centers, the success and value of a clinician or a clinical practice is often determined more by clinical revenue than by any other criteria, including advances in patient care, education, scholarship and research, advocacy, leadership, and generation of intellectual property. Such a situation is particularly damaging to the so-called “cognitive subspecialties” such as rheumatology that do not perform lucrative invasive or noninvasive procedures. The lupus specialist is particularly vulnerable to being perceived as a fiscal liability because of the major time commitment invested in each patient visit. We believe it is essential that physicians caring for patients with lupus are valued and evaluated with criteria beyond a simplistic formula based on reimbursement for office visits. We therefore planned for operation of LUCE to be financially secure by relying on sources of support beyond traditional clinical revenue and grant dollars. As described above, a major impetus to creating the center arose from the greater Pittsburgh community who formed an independent foundation for LUCE and an advisory board to provide philanthropic support. In addition, intellectual property generated by research efforts within the center, while not guaranteed, may potentially generate royalties that return to the center to support the research enterprise. Finally, we believe that lupus clinical care generates significant downstream revenue for academic medical centers. One study of downstream revenue in rheumatology concluded that although academic rheumatologists struggle to bill their salaries through seeing more patients, they are clearly a bargain for a university hospital because they generate more than $10 for every $1 they receive for an office visit.1 It should also be noted that this retrospective study was performed prior to the advent of new intravenous biologic therapies, which will undoubtedly continue to become a larger component of the rheumatologist's and lupus specialist's pharmaceutical armamentarium. There is arguably no disease that is more clinically complex and challenging than lupus, which routinely affects all organ systems. LUCE has been enthusiastically embraced by patients, families, physicians, and trainees. During the first 2 years of existence, physicians in the Lupus Patient Care and Translational Research Center provided support for patients from 25 states—ranging from Alaska to Florida—and from many countries, including Kuwait, Sri Lanka, Spain, Chile, Argentina, the Virgin Islands, Haiti, and Canada. Many of these patients were previously cared for by, and often referred by, rheumatologists. Our experience has been similar to that reported by Reeves and colleagues, in that community physicians, including rheumatologists, generate both false-positive and false-negative diagnoses of lupus.2 In addition, the majority of patients evaluated at LUCE for the first time benefit from multispecialist evaluation and a customized treatment plan. Rheumatologists who refer patients to LUCE frequently admit that lupus is too complex and time-consuming a disease to manage in their general rheumatology practices. New referrals to LUCE also benefit from the opportunity to participate in a menu of research opportunities and access to the latest lupus clinical trials. Subspecialists working together find this model enhances communication among physicians and patients and facilitates integration of patient care with clinical-translational research. It is also likely that this model will be recognized as highly cost effective once the appropriate analyses are completed. Trainees at all levels also enthusiastically report that simultaneous exposure to potential mentors from multiple clinical and scientific disciplines is an ideal and highly efficient mechanism of training that leads to more informed career decisions not only for physician-scientists but also for potential clinician educators and even those predoctoral students in graduate studies outside the school of medicine. Lupus as the prototypic systemic autoimmune disease presents a mystery that spans numerous scientific disciplines. Congressman Tim Murphy (R-PA) relies on his 3 decades as a child psychologist to advocate for meaningful reforms in the US health care system. As one of only a handful of members of Congress with a background in health care, he is co-chair of both the 21st Century Health Care Caucus and the Mental Health Caucus, giving him a platform to educate other members of Congress and the public on ways to make health care more affordable and accessible for all families. During his keynote address at the opening of the Lupus Patient Care and Translational Research Center, he remarked: “This center shows us what we need to be doing with health care in America. This center sets a model that the rest of the world can look to. This isn't doing the same thing and expecting different results. It is doing something different and seeing how hope reaches higher, how faith becomes more expansive, and how ideals and curiosity become reality for our patients and the rest of the world.” This experience has not only given us pause to consider the traditional divisional structure of academic medical centers, but it has also caused us to consider the future of the general rheumatologist in caring for patients with diseases such as lupus. As health care continues to become further specialized with the blending of therapeutics and diagnostics (theranostics), it is possible that the practice of rheumatology will also become further specialized. Lupus has little if anything in common with osteoarthritis, gout, and many of the other disorders traditionally in the domain of the general rheumatologist, either as a differential diagnosis or with regard to management. However, the rheumatologist caring for lupus patients should be intimately familiar with—and should work closely with—experts in the cardiovascular, cerebrovascular, dermatologic, obstetric, and osteoporotic fields, while monitoring for other complications of the disease, such as an increased risk of malignancy. These observations suggest that patients with lupus will benefit most from future efforts focused on the multispecialty practice of “lupology.” Challenging the status quo will always be met with resistance and present challenges. However, we believe that the success of alternative models such as LUCE will facilitate further restructuring of American medical institutions for the ultimate benefit of our patients." @default.
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• W2012898180 title "A Model of Integrated Patient Care and Clinical Translational Research" @default.
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