Editorials
Osteoporosis Management: Out of Subspecialty Practice and into Primary Care
A 60-year-old, small-framed woman with good general health but a strong family history of osteoporosis presents for her well-woman examination. Because she meets screening criteria for osteoporosis,1 her family physician orders a bone density test. Her T-scores are -2.8 at the lumbar spine and -1.5 at the femoral neck. Osteoporosis is diagnosed, and the patient begins treatment with a bisphosphonate and calcium/vitamin D supplements. Two years later, the patient's lumbar-spine bone density is stable, but her femoral-neck T-score has declined by 1.5 percent. She has not had a fracture. The patient asks if the change in her femoral-neck T-score represents a treatment failure and whether this finding warrants referral to a subspecialist.
We can ask the same question about this patient that we ask about any patient with chronic disease: Who should take responsibility for her care? A recent editorial in the Archives of Internal Medicine2 promotes shared responsibility by primary care physicians and subspecialists for osteoporosis management. A strategy in which primary care physicians take the lead in managing this common disorder is optimal because we are the only ones who can implement preventive measures on a population level. Osteoporosis screening and routine management does not require subspecialist input. For example, in the case of the patient described above, the T-score decrease was relatively small. The density at the femoral neck was still within the osteopenia range, and the lumbar spine bone density was stable. She had not incurred a fracture while taking a bisphosphonate. Her score change did not represent a treatment failure, and she did not require referral to a specialty clinic.
In 2002, nearly 22 million women in the United States had osteopenia (bone mineral density below normal but above the level for a diagnosis of osteoporosis). More than 8 million U.S. women 50 years and older currently have osteoporosis, and the number of affected women is expected to exceed 14 million by the year 2020.3 Women with osteoporosis are at increased risk for death or disability from fractures of the hip, spine, or wrist. Osteoporotic fractures could cost as much as $20 billion per year in the United States, with hip fractures accounting for over one third of total expenditures.4 Only primary care physicians can reach patients early enough to screen for and treat osteoporosis before fracture is imminent.
As summarized by Zizic in this issue of American Family Physician,5 well-designed randomized controlled trials have demonstrated the efficacy of risedronate (Actonel) and alendronate (Fosamax) in decreasing vertebral and nonvertebral (including hip) fractures in women with osteoporosis and a history of fracture at baseline. Alendronate also has been shown to decrease fracture incidence in women with osteoporosis but no previous fracture.6
Despite the availability of evidence-based screening guidelines and effective treatment agents,1 implementation of preventive and therapeutic measures is disturbingly low, even in patients who already have incurred fractures.7,8 Whose fault is the poor implementation? A recent survey9 found that more than 80 percent of family physicians wanted to be better informed about bone density testing and osteoporosis treatment. However, many of these physicians felt that available guidelines were out of date or otherwise not useful. A recent review indicated lack of guideline uniformity, low screening rates, and low intervention rates.10
Most osteoporosis research and guideline development still are conducted by subspecialists who are unfamiliar with the unique practice demands and needs of family physicians. It is clear that family physicians need to be involved in all phases of the process-from research to guideline formation and implementation-to ensure the construction and implementation of clinical aids that are tailored to our specialty and practice environments. Tools for screening, diagnosing, treating, and monitoring patients are available. We no longer can wait for someone else to take charge.
The Author
Margaret Gourlay, M.D., M.P.H., is assistant professor in the Department of Family Medicine at the University of North Carolina at Chapel Hill, where she is conducting research on osteoporosis screening and fracture prevention. Dr. Gourlay graduated from Rush Medical College, Chicago, and completed a family medicine residency at the University of California, San Diego, Medical Center. She was an editing fellow for American Family Physician and currently is a contributing editor for AFP.
Address correspondence to Margaret Gourlay, M.D., M.P.H., Department of Family Medicine, William Aycock Bldg., Manning Dr., CB #7595, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC 27599-7595 (e-mail: margaret_gourlay@med.unc.edu). Reprints are not available from the author.
REFERENCES
1. U.S. Preventive Services Task Force. Screening for osteoporosis in postmenopausal women: recommendations and rationale. Ann Intern Med 2002;137:526-8.
2. Mazanec D. Osteoporosis screening: time to take responsibility. Arch Intern Med 2004;164:1047-8.
3. National Osteoporosis Foundation. America's bone health: the state of osteoporosis and low bone mass in our nation. Washington, D.C.: The Foundation, 2002.
4. Cummings SR, Melton L J 3d. Epidemiology and outcomes of osteoporotic fractures. Lancet 2002;359:1761-7.
5. Zizic TM. Pharmacologic prevention of osteoporotic fractures. Am Fam Physician 2004;70:1293-1300.
6. Cranney A, Wells G, Willan A, Griffith L, Zytaruk N, Robinson V, et al. Meta-analyses of therapies for postmenopausal osteoporosis. II. Meta-analysis of alendronate for the treatment of postmenopausal women. Endocr Rev 2002;23:508-16.
7. Feldstein A, Elmer PJ, Orwell E, Herson M, Hillier T. Bone mineral density measurement and treatment for osteoporosis in older individuals with fractures: a gap in evidence-based practice guideline implementation. Arch Intern Med 2003;163:2165-72.
8. Neuner JM, Zimmer JK, Hamel MB. Diagnosis and treatment of osteoporosis in patients with vertebral compression fractures. J Am Geriatr Soc 2003;51:483-91.
9. Jaglal SR, McIsaac WJ, Hawker G, Carroll J, Jaakkimainen L, Cadarette SM, et al. Information needs in the management of osteoporosis in family practice: an illustration of the failure of the current guideline implementation process. Osteoporos Int 2003;14:672-6.
10. Morris CA, Cabral D, Cheng H, Katz JN, Finkelstein JS, Avorn J, et al. Patterns of bone mineral density testing: current guidelines, testing rates, and interventions. J Gen Intern Med 2004;19:783-90.
The Continuity of Care Record
For more than a decade there has been agreement in the United States that information technology is a critical part of any effort to achieve high performance health care for everyone. The potential benefits of moving from sequences of disconnected and episodic visits between patients and doctors to continuous connectivity are widely recognized to be of great value to patients, families, communities, investigators, payers and purchasers, employees, health organizations, and physicians.1
A full quarter of a century ago, a uniform ambulatory medical care minimum basic data set was designed and reported to the United States National Committee on Vital and Health Statistics.2 As the 21st century began, the Institute of Medicine articulated yet again the enormous potential for information technology to improve health care quality by enabling safe, effective, patient-centered, timely, efficient, and equitable care.3 The Institute acknowledged that the health care system will move away from the current medical record (an artifact of visits) to health care information that is interactive, real-time, and prospective. The potential contrasts starkly with what has been achieved so far. Now we have an opportunity to accomplish these goals.
The Continuity of Care Record (CCR), is a document standard for basic health information, using XML (extensible mark-up language). It is being developed jointly by ASTM International, the Massachusetts Medical Society, the Health Information Management and Systems Society, the American Academy of Pediatrics, and the American Academy of Family Physicians.
The CCR is intended to foster and improve continuity of patient care, reduce medical errors, increase patients' roles in managing their health, enable epidemic monitoring and public health research, and ensure at least a minimum standard of secure health information transportability. It is not an electronic health record or proprietary software. It is compatible with other efforts to standardize health information systems and can actually work across these efforts. The CCR is one tool for realizing goals held by the Institute of Medicine for a decade.
Currently, patient care can be disrupted by the incompatibility of information technology in different physicians' offices and hospitals. In each care setting, patients and physicians are frustrated by reliance on fax machines, telephones, and patient memory to reassemble information that already has been collected at least once before. This system is not only inaccurate, it is also dangerous for patients. Furthermore, it is wasteful and expensive.
Exchanging data as personal and important as health care information throughout the country should be as easy as using an ATM card. One way this type of information exchange has been accomplished with other applications is for a market leader to set the standards that other vendors typically follow. However, the number of health information systems vendors, and the proprietary nature of their software and services, is increasing. A recent survey of nearly 1,300 family physicians who use electronic health records in their practices found that 264 different software vendors were used, the largest of which was used by only 148 physicians (Center for Health Information Technology, unpublished data, January 2003). None of the 264 products currently shares data with any of the other products.
With the CCR, we propose concentrating on the data, not the computer systems. By separating the data from their uses and the programs that handle them, we can ensure that the data are accurate regardless of how, when, or where they are presented for access. Just as documents open in any of several word-processing programs, the CCR allows disparate information technologies and software programs to read, interpret, and transmit a core summary of personal health information.
A growing number of clinical information systems companies agree to implement the CCR, and the prospects are good that widespread adoption of this first interoperability standard can be achieved in 2004 and 2005.
The CCR is also portable, allowing patients to carry with them a summary of their most important personal information. It can be printed, carried on a USB (universal serial bus) "thumb" drive or smart card, e-mailed directly to a physician, or uploaded to a secure Web site, where it can be accessed with consent. Wherever a patient takes the CCR, the data in it, such as recent blood pressure readings, a current list of medications, medication allergies, and laboratory test results, can be accessed for immediate use.
The CCR also has the potential to empower patients to participate in managing their health. For example, patients could use the CCR on their home computer to review medications for drug-drug interactions or to synchronize their dosing schedule with a personal digital assistant. Software on their home computer or on a secure Web site could use CCR content about age, sex, and previous conditions to send alerts to patients about immunizations and recommended screening tests. Combinations of health information elements, such as current medications, age, and allergies, could help patients locate clinical trials and support groups, or serve as a filter for personalized medical information searches on the Internet.
Although some people may worry about the privacy implications of portable health information, the Health Insurance Portability and Accountability Act (HIPAA) actually supports the widespread adoption of the CCR. HIPAA explicitly establishes that patients have a legal right to access their own health information in all but exceptional cases, and it mandates assured security of those data while they are in the health care facilities' computers or during transit. Hospitals and physicians must take specific privacy precautions but would be obligated to provide patients with their CCR on demand. What patients choose to do with their CCR would be up to them.
HIPAA-compliant mechanisms of extracting de-identified health data also could improve research and public health endeavors. Today, efforts to study the effects of care on health, identify epidemics and bioterrorist attacks, understand population health over time, and make better decisions about health care spending suffer from a lack of access to basic health information at the population level. The health of all Americans could benefit from the use of de-identified data to meet widely accepted public health objectives.
The advantages of this simple and inexpensive personal health information standard are compelling. Patients and their primary care physicians would no longer spend time sorting through prescription bottles, tracking down specialists' notes, or trying to remember when to obtain appropriate preventive screening. The CCR becomes a tool for the patients and their primary care physicians that helps them integrate their care and spend time making better choices from the chaos that is health care. In this way, the goals for each patient can be supported and maintained by the CCR, keeping everyone on task.
In the future, primary care physicians will comprehensively review and update the CCR as a fundamental deliverable of a 21st century annual health check-up. The CCR will save time, be patient-centered, reduce the risk of medical errors, and save lives.
The Authors
David C. Kibbe, M.D., M.B.A., is director of the American Academy of Family Physicians' Center for Health Information Technology in Washington, D.C.
Robert L. Phillips, JR., M.D., M.S.P.H., is assistant director of the Robert Graham Center and assistant professor of family medicine at Georgetown University School of Medicine, both in Washington, D.C.
Larry A. Green, M.D., is director of the Robert Graham Center and professor of family medicine at the University of Colorado School of Medicine, Denver.
Address correspondence to David C. Kibbe, M.D., M.B.A., Center for Health Information Technology, American Academy of Family Physicians, 2021 Massachusetts Ave. NW, Washington, DC 20036 (e-mail: dkibbe@aafp.org). Reprints are not available from the authors.
REFERENCES
1. Donaldson MS, Lohr KN. Health data in the information age: use, disclosure, and privacy. Washington, D.C.: National Academy Press, 1994.
2. National Committee on Vital Health and Statistics. Uniform ambulatory medical care: minimum data set: report of the National Committee on Vital and Health Statistics. Hyattsville, Md.: U.S. Department of Health and Human Services, 1981.
3. Institute of Medicine. Committee on Quality of Health Care in America. Crossing the quality chasm: a new health system for the 21st century. Washington, D.C.: National Academy Press, 2001.
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