Information Systems for Patient Follow-Up and Chronic Management of HIV and Tuberculosis: A Life-Saving Technology in Resource-Poor Areas

Abstract

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.

Challenges in Implementing Patient‐centred Information Systems in Tanzania: An Activity Theory Perspective

“…There are several reasons which can make clients opt out of the health programs, including social stigma attached to the HIV disease, the need to prioritize income-generating work, and too high transport costs (Cutts, 1991;Fraser et al, 2007). Defaulting health programs is not beneficial for the patients themselves, and it also undermines WHO (World Health Organization) and national health authorities' initiatives and efforts to improve the health status and reduce morbidity and mortality rates.…”

“…Defaulter tracing systems are common in HIV related programs (see for example, Fraser et al, 2007;Mwatawala et al, 2012). These systems mainly support two tasks: identifying and tracing defaulters.…”

“…Thomson et al (2011) present an example of a defaulter tracing system in a HIV/TB program with the following steps: patient is enrolled into the program; patient misses the scheduled appointment; patient is identified as a potential defaulter; health worker traces patient, health worker documents outcome and enters data in the computer system which could be statistically analyzed. In the literature, several approaches for tracing defaulters are suggested, including using CHW (Community Health Workers), home visits, phone calls, written reminders, collaboration with community-based organizations and outreach teams (Cutts, 1991;Marsh, 2000;Fraser et al, 2007;Forster et al, 2008;Thomson et al, 2011;Chadambuka et al, 2012).…”

“…For example CHW, peer counselors, volunteers, mentor mothers, traditional chiefs and religious leaders could be involved (Marcos et al, 2012). Another strategy to support defaulter tracing activities is to use an information system which will keep records of different health services provided, provide continual updates about treatment status and track all patients within health programs (Fraser et al, 2007;Ghadrshenas et al, 2013). However, standardized information artefacts and adequate training for health workers are needed, in order to enable healthcare workers to collect accurate, timely and consistent data (Ghadrshenas et al, 2013).…”

“…Specifically, the paper contributes to HIS literature which has elaborated how designed tools are utilized in practice at the level of primary health care of developing countries' context. In this literature there are few studies which have elaborated defaulter tracing practices in maternal and child health settings (see for example DeRenzi et al, 2012;MacLeod et al, 2012); since most studies on defaulter tracing practices are in vertical programs such as tuberculosis, HIV/AIDS and PMTCT (see for example Jones et al, 2005;Fraser et al, 2007;Nglazi et al, 2010;Busza et al, 2012;Thomson et al, 2011;Kalembo and Zgambo, 2012;Marcos et al, 2012).…”