Data collection and storage
The collection and analysis of data from people living with HIV is crucial in maintaining and further improving the medical care these people receive. Medical data from almost all people living with HIV who receive care at any of the official HIV treatment centres are therefore collected and stored in the SHM database. SHM manages this database, owns the coded data and ensures the data is accessed and used appropriately.
SHM uses the data to gain insight into the HIV epidemic in the Netherlands. SHM also grants permission to HIV research groups to use specific data for research purposes and ensures the quality of the disseminated information.
HIV treating physicians also have access to data and can receive tailored information that can be used to progress the level of patient care at their treatment centre.
More information about the safeguarding of patient privacy, access to the database, and de-registration can be found in the Patients section.
How are the data collected?
Relevant medical data from medical records are entered into our database by SHM's data collectors who work in the HIV treatment centres. In many cases, laboratory data are transmitted directly into SHM's database through a secure link with the hospital laboratory (LabLink).
Confidentiality is safeguarded at all times and data are stored in the database in a coded form.
Which data are collected?
SHM's data collection contains the following information:
Information entered upon registration
These data are collected during the first visit at the outpatients' clinic and include information such as date of birth, date of last negative and first positive HIV test, route of infection, and smoking, alcohol and drug use.
Information about further treatment/follow-up data
This comprises data that are collected at each follow-up visit. These include information about the treatment, disease symptoms, and laboratory results.
Information about children living with HIV
SHM also collects information about children who have been exposed to, or are living with, HIV.
Complete overview of data collected by SHM
For a complete overview of the data collected by SHM, please download the document below:
- Patient Data Collection form (ENG), 67KB
SHM brochure: From medical information to optimal treatment
Our brochure provides a clear and simple explanation of our work. It illustrates how the collection and analysis of coded medical information is used in national and international HIV research that ultimately contributes to further improving HIV care in the Netherlands and worldwide.