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First published February 24, 2006 as JAMIA PrePrint; doi:10.1197/jamia.M2005
Journal of the American Medical Informatics Association 2006;13(3):253-260
© 2006 American Medical Informatics Association


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Submitted on October 11, 2005
Accepted on February 13, 2006

Viewpoint: A Pragmatic Approach to Constructing a Minimum Dataset for Care of Patients with HIV in Developing Countries

William M. Tierney MD1*, Eduard J. Beck MBBS, PhD2, Reed M. Gardner PhD3, Beverly Musick MS4, Mark Shields MD, MPH, MS5, Naomi M. Shiyonga6, and Mark H. Spohr MD7

Affiliation of the authors: 1 Indiana University School of Medicine, Indianapolis, IN, USA; Regenstrief Institute, Inc., Indianapolis, IN, USA ; 2 World Health Organization, Geneva, Switzerland; McGill University, Montreal, Canada; 3 Department of Medical Informatics, University of Utah School of Medicine, Salt Lake City, UT, USA; 4 Indiana University School of Medicine, Indianapolis, IN, USA; 5 Oak Ridge Institute of Science and Education, Oak Ridge, TN, USA; Centers for Disease Control and Prevention, Global AIDS Program, Lusaka, Zambia; 6 National AIDS, TB, and Leprosy Control Programme, Ministry of Health, Nairobi, Kenya; 7 USAID MEASURE Evaluation, John Snow, Inc., Arlington, VA, USA

* To whom correspondence should be addressed.

Providing quality health care requires access to continuous patient data which developing countries often lack. A panel of medical informatics specialists, HIV clinicians, and program managers suggests a minimum dataset for supporting the management and monitoring HIV patients with HIV and their care programs in developing countries. The proposed minimum dataset consists of data for registration and scheduling, monitoring and improving practice management, and describing clinical encounters and clinical care. Data should be numeric or coded using standard definitions and minimal free text. To enhance accuracy, efficiency, and availability, data should be recorded electronically by those generating them. Data elements must be sufficiently detailed to support clinical algorithms/guidelines and aggregation into broader categories for consumption by higher level users (e.g., national and international health care agencies). The proposed minimum dataset will evolve over time as funding increases, care protocols change, and additional tests and treatments become available for HIV-infected patients in developing countries.







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