Objective To describe the electronic medical databases used in antiretroviral therapy (ART) programmes in lower-income countries and assess the measures such programmes employ to maintain and improve data quality and reduce the loss of patients to follow-up. Methods In 15 countries of Africa, South America and Asia, a survey was conducted from December 2006 to February 2007 on the use of electronic medical record systems in ART programmes. Patients enrolled in the sites at the time of the survey but not seen during the previous 12 months were considered lost to follow-up. The quality of the data was assessed by computing the percentage of missing key variables (age, sex, clinical stage of HIV infection, CD4+ lymphocyte count and year of ART initiation). Associations between site characteristics (such as number of staff members dedicated to data management), measures to reduce loss to follow-up (such as the presence of staff dedicated to tracing patients) and data quality and loss to follow-up were analysed using multivariate logit models. Findings Twenty-one sites that together provided ART to 50 060 patients were included (median number of patients per site: 1000; interquartile range, IQR: 72-19 320). Eighteen sites (86%) used an electronic database for medical record-keeping; 15 (83%) such sites relied on software intended for personal or small business use. The median percentage of missing data for key variables per site was 10.9% (IQR: 2.0-18.9%) and declined with training in data management (odds ratio, OR: 0.58; 95% confidence interval, CI: 0.37-0.90) and weekly hours spent by a clerk on the database per 100 patients on ART (OR: 0.95; 95% CI: 0.90-0.99). About 10 weekly hours per 100 patients on ART were required to reduce missing data for key variables to below 10%. The median percentage of patients lost to follow-up 1 year after starting ART was 8.5% (IQR: 4.2-19.7%). Strategies to reduce loss to follow-up included outreach teams, community-based organizations and checking death registry data. Implementation of all three strategies substantially reduced losses to . Conclusion The quality of the data collected and the retention of patients in ART treatment programmes are unsatisfactory for many sites involved in the scale-up of ART in resource-limited settings, mainly because of insufficient staff trained to manage data and trace patients lost to follow-up.

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Background The scale-up of treatment for HIV and multidrug-resistant tuberculosis (MDR-TB) in developing countries requires a long-term relationship with the patient, accurate and accessible records of each patient’s history, and methods to track his/her progress. Recent studies have shown up to 24% loss to follow-up of HIV patients in Africa during treatment and many patients not being started on treatment at all. Some programs for prevention of maternal–child transmission have more than 80% loss to follow-up of babies born to HIV-positive mothers. These patients are at great risk of dying or developing drug resistance if their antiretroviral therapy is interrupted. Similar problems have been found in the scale-up of MDR-TB treatment.Objectives The aim of the study was to assess the role of medical information systems in tracking patients with HIV or MDR-TB, ensuring they are promptly started on high quality care, and reducing loss to follow-up.Methods A literature search was conducted starting from a previous review and using Medline and Google Scholar. Due to the nature of this work and the relative lack of published articles to date, the authors also relied on personal knowledge and experience of systems in use and their own assessments of systems.Results Functionality for tracking patients and detecting those lost to follow-up is described in six HIV and MDR-TB treatment projects in Africa and Latin America. Preliminary data show benefits in tracking patients who have not been prescribed appropriate drugs, those who fail to return for follow-up, and those who do not have medications picked up for them by health care workers. There were also benefits seen in providing access to key laboratory data and in using this data to improve the timeliness and quality of care. Follow-up was typically achieved by a combination of reports from information systems along with teams of community health care workers. New technologies such as low-cost satellite Internet access, personal digital assistants, and cell phones are helping to expand the reach of these systems.Conclusions Effective information systems in developing countries are a recent innovation but will need to play an increasing role in supporting and monitoring HIV and MDR-TB projects as they scale up from thousands to hundreds of thousands of patients. A particular focus should be placed on tracking patients from initial diagnosis to initiation of effective treatment and then monitoring them for treatment breaks or loss to follow-up. More quantitative evaluations need to be performed on the impact of electronic information systems on tracking patients.

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Effective health information systems require timely access to all health data from all sources, including sites of direct care. In most parts of the world today, these data most likely come from many different and unconnected systems-but must be organized into a composite whole. We use the word interoperability to capture what is required to accomplish this goal. We discuss five priority areas for achieving interoperability in health care applications (patient identifier, semantic interoperability, data interchange standards, core data sets, and data quality), and we contrast differences in developing and developed countries. Important next steps for health policy makers are to define a vision, develop a strategy, identify leadership, assign responsibilities, and harness resources.