A Pragmatic Approach to Constructing a Minimum Data Set for Care of Patients with HIV in Developing Countries
- William M Tierney,
- Eduard J Beck,
- Reed M Gardner,
- Beverly Musick,
- Mark Shields,
- Naomi M Shiyonga,
- Mark H Spohr
- Affiliations of the authors: Indiana University School of Medicine, Indianapolis, IN (WMT, BM); Regenstrief Institute, Inc., Indianapolis, IN (WMT); World Health Organization, Geneva, Switzerland (EJB); McGill University, Montreal, Quebec, Canada (EJB); Department of Medical Informatics, University of Utah School of Medicine, Salt Lake City, UT (RMG); Oak Ridge Institute of Science and Education, Oak Ridge, TN (MS); Centers for Disease Control and Prevention, Global AIDS Program, Lusaka, Zambia (MS); National AIDS, TB, and Leprosy Control Programme, Ministry of Health, Nairobi, Kenya (NMS); USAID MEASURE Evaluation, John Snow, Inc., Arlington, VA (MHS)
- Correspondence and reprints: William M. Tierney, MD, Room M200-OPW, Wishard Memorial Hospital, 1001 West Tenth Street, Indianapolis, IN 46202; e-mail: < >
- Received 11 October 2005
- Accepted 13 February 2006
Providing quality health care requires access to continuous patient data that developing countries often lack. A panel of medical informatics specialists, clinical human immunodeficiency virus (HIV) specialists, and program managers suggests a minimum data set for supporting the management and monitoring of patients with HIV and their care programs in developing countries. The proposed minimum data set 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 data set will evolve over time as funding increases, care protocols change, and additional tests and treatments become available for HIV-infected patients in developing countries.
This project was supported in part by grant D23-TW01082 from the Fogarty International Center, National Institutes of Health, grant 2004-AR-005 from the Rockefeller Foundation, and an appointment to the Research Participation Program at the Centers for Disease Control and Prevention administered by the Oak Ridge Institute for Science and Education through an interagency agreement between the U.S. Department of Energy and CDC (MS).
The authors thank Christopher Bailey and the staff of the World Health Organization for their work in convening the workshop entitled “EMRs and Knowledge Sharing for Antiretroviral Therapy Scale Up in Sub-Saharan Africa” that met in the Stanley Hotel in Nairobi, Kenya, on August 30–31, 2004. This article represents the opinions of the authors and does not necessarily represent the opinions of their respective institutions, the Fogarty International Center, the Centers for Disease Control and Prevention, and the World Health Organization, which convened the conference from which this paper emanated.