Unified registers have been used in healthcare in developed countries for a long time now. For example, the American Association for Vascular Surgery has launched 12 registers for venous and arterial diseases. In Russia, so far, the Association of Phlebologists has been the only one to fully launch a unified register. As for other areas, this process is at its fledgling stage.
Creation of the first register in Russia
Russian phlebologists, observing the successful experience of their foreign colleagues, independently initiated the creation of a register. The first register was created in 2014 — without the financial support of the association or the state — out of the doctors’ pockets. For the next 12 months, it was running in test mode. When it became clear that the project was successful, the register was made public and recognized by the association.
Launching a register requires time, primarily for entering data. Doctors at outpatient clinics are often reluctant to enter data into the unified database due to the lack of motivation. The register is interesting, first of all, to researchers and scientists defending their theses.
The first unified base included chronic venous diseases. In 2017, it was decided to launch an additional register for thrombosis. This project was funded by the Association of Phlebologists. The work on this thrombosis register has been completed already, and it was launched recently.
The process of selecting a specialist to create the project interface and databases was carried out through a tender and took a lot of time. The rating, reputation, and compliance with requirements were taken into account. The selected specialist is still working with the program and improving it.
The development of a registry and its subsequent maintenance is a task within the powers of a single programmer. However, more complex healthcare projects are usually entrusted to medical software companies that specialize in the development and support of IT solutions — like, for example, Andersen.
The outcomes
The main register consists of three blocks:
- patient data;
- treatment methods;
- results obtained.
The register of venous thrombosis is organized in a similar pattern and additionally includes the following indicators:
- laboratory tests;
- probability scale;
- thrombosis description;
- treatment method selected (conservative or surgical).
The doctor can make changes to the register within a minute. It’s not necessary to fill in all the data — the doctor independently chooses the tabs that they consider necessary to fill. The data is entered after a patient’s visit or after a surgical operation.
Among other data, the register includes questionnaires with a large number of items to collect additional information. The database for one patient is often incomplete, but when analyzing an array of 10 thousand patients, the probability of getting the required answers is high.
The chronic venous disease registry already includes around 4,000 patients’ clinical cases. A certain dynamic can be detected in the cases of 2,400 people. The data is supplemented by more than 100 doctors, and thanks to Big Data, systematizing such a huge database of patients is easy.
The value of a register
The base helps to optimize the clinical process and predict the frequency of relapses. The register contains check-up results, statistics on the effectiveness of treatment methods, etc. The doctor analyzes the patient’s data, compares it with the data from the clinical base, and selects effective treatment based on the experience of their colleagues. The table downloaded from the register is easy to use.
The register is used as a basis for studies, including randomized ones. Pharmaceutical companies make observations by analyzing data. Patients’ personal data are differentiated according to their physicians. Thus patients’ privacy is protected: finding out data of other patients is impossible.
The Association of Phlebologists actively invites doctors to participate in completing the register, holds scientific conferences, and engages social media.
In 2005, the international committee introduced a new rule about research publications. Medical journals can publish only the results of research included in a unified database. This happened after an incident of falsifying clinical data. The Association of Phlebologists suggested the magazine “Phlebology” to do the same.
The editorial board of the magazine has issued new publishing rules. Before publication in a scientific journal, the research results must be entered into the register. This requirement improves the quality and reliability of the information provided.
A unified register brings lots of benefits to medical staff. Ease of data entry and result analysis will attract more users over time. The system is convenient to work with, so more and more specialists are showing interest in the register.
