Importance of patient registration and data collection

It is frequent to hear from different sources that the epidemiological data with which decisions are made in public health policies in Colombia present deficiencies that do not ensure the validity of their information. However, this is not only a Colombian problem but rather an international one where the lack of patient information and its quality limits knowledge and research. This is not a new problem, as the WHO in its 2003 World health report highlighted the importance of using systematic methods for the well-being of each country:

«Countries will benefit greatly if health information systems are based on a national plan that offers a framework, indicators, and data collection, analysis, and dissemination strategies.»

The good news is that there is much to be done and one of the most used tools to achieve this objective is the creation of databases with demographic, epidemiological, clinical and economic information that allows knowing in detail the course of a disease in a context of real life: Patient Records. For these records to be of quality, they must guarantee the validity of the data, they must be complete and also must be able to be consulted by interested institutions such as health service providers, government, academic institutions, patient associations, pharmaceutical industry, researchers, research centers, all with a common goal: to use information for the well-being of the population.

It seems like an arduous task, and yes, it actually is, because it requires a whole specialized and trained team for the design, collection, analysis, dissemination and publication of the data. The design of a patient registry is based on the methodology of an observational study, where there is no intervention and whose objective, among others, is to reflect the behavior of a disease in a real life context. In this aspect, the design and data capture system are of vital importance, which should facilitate the process, guaranteeing the security and confidentiality of the information. Taking advantage of the benefits of the XXI century, it is essential that this capture is made through specialized digital platforms in real time and designed according to the needs of the health system.

Data collection is perhaps one of the main challenges since the existing systems are not designed with the objective of collecting data for a registry but to meet the need to record basic information for patient care. Most of the time they do not even allow data processing because they do not have a database structure, which prevents their analysis. On the other hand, the capture of this information can result in wasteful work for health providers as it is not the focus of their activity. There are alternatives to be considered, such as the support of trained personnel to capture data from its source document (medical history), and that allow the construction of robust and reliable databases and that facilitate a reliable analysis.

The information obtained in a registry of patients with a certain disease is very useful to carry out analyzes on the natural history of the disease, adherence to management guidelines, access to the health system, drug safety and new management trends. It also makes it possible to improve the quality of information as the registry grows and also favors the quality of medical care for patients. Although it allows correlations to be established, it is not intended to evaluate, for example, the efficacy of a drug, and for this the best existing model is still the clinical trial, but it is a valuable basis for generating research questions that lead to the creation of hypotheses and to the design of specific studies to seek those answers.

For decision makers, whether they are individual or institutional providers, the registry is a valid source to evaluate their processes and ratify or change behaviors of routine clinical practice. It is essential to guarantee the proper handling of the information from the point of view of its confidentiality and privacy.

The development of patient records is an excellent option for improving the quality of health information in Colombia, and to achieve this, the participation of all those who are part of the system, such as insurers, health service providers, is necessary. the government, universities, drug and medical device providers as well as patients.