There are multiple reasons for developing countries like SA to establish a relational database for HIV/AIDS clinical and research issues.
This is the belief of Dr Joseph Eron, Associate Professor of Medicine, from The University of North Carolina Centre for AIDS Research (UNC CFAR), which has partnered with SAS Institute, leading vendor of business intelligence software, to develop a patient database that is unique in both improving patient care and providing intelligence into the spread of AIDS among the as yet understudied rural minority population of the southern US.
"Local, national and international governments, along with the WHO, IMF and other non governmental organisations, need accurate information to understand the progression of the HIV/AIDS epidemic in SA and other developing countries, and to understand those interventions that are working and those that are not," says Dr Eron.
"Outcome assessment is nearly impossible without a highly organised, systematic database that can provide answers to straightforward and complex questions, using unbiased aggregate data obtained directly from the infected and affected populations. Clear, precise information would lead to better levels of funding and more rapid deployment of funds and resources," Dr Eron adds.
"The extent of the AIDS epidemic in sub-Saharan Africa is well-documented, as it the fact that AIDS is on the rise in Russia and China," says Dr Eron. "Less well-known is that AIDS is still on the increase in the West, with 40 000 new cases of HIV infection reported each year in the US."
"The university is using SAS business intelligence software to provide really meaningful information to help fight the spread of AIDS," says Bill Hoggarth, managing director of SAS Institute's South African operations.
North Carolina, the eleventh most populous state in the US, is among a number of southern states reporting a particularly high - 41% - increase in AIDS cases in 2001 compared with the previous year, with particular prevalence among minorities and people of colour.
Although huge progress has been made over the last 10 years in combating AIDS through medication, HIV is a crafty virus that can mutate into forms that are resistant to existing drug regimens. Following the so-called "triple cocktail" regime requires discipline by patients who must consume different medications at strictly timed intervals.
"SA has done much research on AIDS to date, but there is still an enormous need here for further investigation. We require data to be collected and organised to get a handle on the extent of the problem, and to formulate the right research questions," says Hoggarth.
"The need for a strong relational database to study HIV/AIDS clinical and research issues in this country is even greater than the need that existed in North Carolina," adds Dr Eron.
"For a start, the magnitude of the problem is much greater," Dr Eron says. "The prevalence of HIV infection in SA is 10 times higher than in North Carolina, or almost anywhere in the US. Organisation of information about HIV infected persons in care is therefore essential.
"With such high numbers of cases, important clinical events, trends within the populations, new types of infections, or complications of therapy could easily be missed without an efficient system for monitoring trends, or asking simple but important questions at frequent intervals. All these things can be accomplished easily with the relational database system set up in our collaboration with SAS," he adds.
"Secondly, in emerging countries there are fewer physicians, scientists and clinical researchers with the necessary level of training and experience to take care of HIV-infected individuals. Precious intellectual resources should not be wasted by manually examining records by hand, or trying to accumulate data inefficiently. A co-ordinated, easy to use, relational database, intimately linked to statistical analysis software, would be a tremendous benefit to workers in the field."
At present, most research databases are used to track the overall spread of AIDS, with individual patient care handled separately. Yet UNC CFAR has built a so-called longitudinal database (one that monitors patient health over time) that has made an enormous contribution to the improvement in patient care.
"The collaboration between UNC CFAR and SAS in developing a clinical and research HIV/AIDS database has been one of the most successful collaborative projects the centre has undertaken," says Dr Eron.
"The technical sophistication of the database, its ease of use and the strengths of the SAS statistical analysis software has greatly facilitated access to data from our HIV infected clinic population. It has also allowed us to perform simple and complex searches, as well as analyses that we were previously impossible, or literally took months with our previous methods."
Developing countries have an overwhelming need to continually train additional physicians, nurses, other clinicians and research scientists. Any system that allows rapid, systematic assembly of information, and could lead to important discovery, would be central to such training.
"In SA," says SAS's Hoggarth, "Anglo American, the global mining giant, who recently agreed to provide anti-retroviral therapy (ART) to its South African employees with HIV/AIDS at the group's expense, carried out intense discussions and research prior to making its decision."
Anglo American's research results estimate that of the company's 32 000 workers, one of every five employees carry the virus.
Additional research from the United Nations estimates that by 2010, the AIDS virus will reduce SA's gross domestic product by 17%.
"We are in the process of investigating some initiatives where SAS's business intelligence software can best be utilised to consolidate all existing research available on AIDS and the South African workforce, to actively participate in improving patient care and the lives of those infected with HIV AIDS, in much the same way the US is doing," concludes Hoggarth.
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The University of North Carolina Centre for AIDS Research (UNC CFAR) is a consortium that includes the University of North Carolina at Chapel Hill, the Research Triangle Institute and Family Health International. Established in 1998, it is one of the largest multidisciplinary networks of HIV/AIDS research in the US.
UNC CFAR used SAS software and programming expertise to develop a confidential data warehouse of clinical strategies, therapeutic outcomes and socio-demographic risk information of people with HIV.
The UNC CFAR data warehouse is the first to serve the Southeastern United States which the Centres for Disease Control (CDC) have identified as having a population at increasing risk for HIV transmission and infections.
The data warehouse is populated from the existing hospital DB2 database as well as from a customised data entry tool that is used to abstract data from clinical records.
Data for 1 000 patients has so far been captured. Over 1 200 current patients have provided informed consent for prospective data collection. The data warehouse houses over 7 million laboratory results.
Direct data access is limited to a specific user groups. A secure dataset containing patient identifying information is controlled through a layer of password protection. A surrogate patient key is assigned to each patient to hide his/her identity within the data tables accessed by researchers.
The data warehouse project was enabled by a $600 000 grant from SAS Institute covering software and training.
At the core of the initiative is the Patient Summary Record (PSR), which is output directly from a clinical data warehouse built in SAS. The PSR provides a visual summary of two important indicators of patient health: the level of CD4 or T-Helper cells - the cells providing immunity against disease that are destroyed by HIV - as well as levels of HIV RNA , the virus itself. These graphs are supplemented by additional information on medications, illnesses and adverse reactions to medications.
The PSR has improved patient care in three ways:
It provides clinicians with an immediate overview of patient health. This is important since many patients attend the clinic on a "walk-in" basis, or in emergency situations. In both cases, the PSR provides the clinician with a snapshot of clinical history that enables them immediately to treat the patient on an informed basis. Previously, they would have had to leaf through multiple pages of hand-written notes, as well as peruse multiple screens in the hospital's clinical information system.
It encourages patients to take responsibility for their clinical care. Before the PSR, doctors would discuss numbers with patients that, because they appeared abstract, had little impact on the patient's willingness to follow often-complicated medication regimes. With the visual picture presented by the PSR graphs, patients can understand their state of health and see how their life-style and drug regime contributes to it. UNC clinicians report a huge impact in patients' willingness to take responsibility for their own health. It improves the quality of patient data: Missing laboratory values are immediately obvious on the PSR, prompting clinicians to initiate follow-up.
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