Data collection

The collection and analysis of data from people living with HIV is crucial to maintaining and further improving the medical care these people receive. Therefore, medical data from almost all people living with HIV who receive care at any of the official HIV treatment centres in the Netherlands are collected and stored in the SHM database. SHM manages this database and ensures the data are accessed and used appropriately.

SHM uses the data to gain insight into the HIV epidemic and HIV treatment 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.

Data collection takes place in the 26 hospitals throughout the Netherlands that have been recognised by the Minister of Health as HIV treatment centres and in the 4 paediatric HIV treatment centres.

Relevant medical data from medical records are entered into our database by our 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 (‘pseudonymised’) form. 

The following information is collected by SHM:

Information upon initial registration
These data are collected during the first visit to 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 are living with HIV, as well as about HIV, but also about children who have been exposed to HIV and anti-HIV drugs.

As part of routine HIV care, blood is taken at each visit.  Instead of discarding the surplus, blood plasma is stored under a code for scientific research. Patients are always asked for prior consent by their treating physician. In consultation with their specialist, patients are notified of the findings of any research for which their plasma has been used. This is particularly important if these findings have implications for that patient’s treatment. 

Our data collectors work within the treatment centre and are subject to medical confidentiality. Personal data are not stored in the database. All the data in our database are pseudonymised. This means that personal data are encoded in a way that ensures that individuals can never be directly identified through the data we collect.

SHM does not provide any raw data to third parties, such as insurance companies or pharmaceutical companies.

Once you enter care at a designated HIV treatment centre in the Netherlands, you will be registered in SHM’s database. This registration is needed to keep an accurate count of the number of HIV patients. However, you can object to further collection of your data through your treating physician. You will then be signed out after registration and further data will remain unknown. 

Our brochure explains how the collection and analysis of data from people living with HIV can contribute to optimising HIV care for these people.

A more detailed explanation of what participating in the national surveillance of HIV entails is provided in our patient information sheet.

Your HIV treating physician or HIV nurse consultant will also be able to answer most questions regarding SHM. 

Should you have further questions, please feel free to contact us at hiv.monitoring@amc.uva.nl.

Download our brochure: From diagnosis to optimal treatment

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