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

Abstract

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.

Designing a Patient-Centered User Interface for Access Decisions about EHR Data: Implications from Patient Interviews

“…A "data deluge" is not desirable because providers can become overwhelmed by irrelevant details. Previous research has addressed the "minimum data set" necessary to support care, 35 but this concept has not been extended to other populations. Future research should investigate whether the concept of the "minimum data set," which provides the optimal amount and type of information providers need in different medical situations, is feasible across medical conditions.…”

Information, care, HIV/AIDS, and the linking of improved health and social outcomes using electronic information management tools in resource poor nations

“…With reliable information, care can be delivered more to local and regional areas within a given nation [20,22,26].…”

“…These research data have been used for monitoring large groups of people in such areas as HIV prevalence testing, monitoring of tuberculosis therapy, resource use, and future resource needs for newer health care regions (20,26).…”

“…• Disease prevalence is measured electronically and is more timely and accurate. • Information required to manage care is more timely, reliable and accurate [18][19][20]25,26]. • Local and national governments rely on information from regional health centres to allocate funding and plan developments.…”

“…• Resource use in health can be measured as a by-product of the direct patient care process, through the use of effective system design where data are captured once and once only, yet is usable many times over for no significant additional costs [18][19][20]25,26]. • As the record systems increase in complexity and the patient database expands, there will initially be a mixture of direct data capture onto the computer and paper-data capture forms for retrospective data capture.…”