Data collection

The collection and analysis of data from people living with HIV is crucial for maintaining and further improving 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, after expression of consent. 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 does not share data with commercial organizations, such as insurance companies or pharmaceutical companies. SHM grants permission to HIV research groups to use specific data for research purposes, if they meet strict legal and ethical requirements. In addition SHM ensures quality control of 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 24 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.

The following information is collected by SHM:

Information upon initial registration

After expression of consent has been provided initial 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. In case treatment for HIV also took place at (an)other treatment center(s), i.e. meaning a patient has been relocated, relevant data from other HIV treatment centers are also collected. In the case where patients do not provide their consent for using (their) data for research purposes, only anonymized basic information incl. year of birth, gender and whether or not born in the Netherlands will be noted for the purpose of reporting the number of HIV infections in the Netherlands.

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.

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.

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SHM has taken various measures to properly protect your (medical) personal data:

• All SHM employees who work with patient data have signed a confidentiality agreement.

• Your personal data that we need for SHM registration, after you have given us  your consent, is pseudonymised and stored separately from your pseudonymised medical data.

• Your data will be stored in the national SHM database within the Amsterdam UMC IT infrastructure which is. certified in the field of information security (ISO27001 and NEN7510).

• Treatment data, that is shared with approved research institutes, only contains the necessary data for the relevant research in which the SHM code number has been replaced by a random code. This data will be securely shared and destroyed upon completion or termination of the research.

• Your data will not be shared with commercial parties such as insurers or pharmaceutical companies..

You can withdraw your expression of consent from your treating physician if you no longer want treatment data to be used for scientific research. SHM will then no longer collect your treatment data. Your personal data from the registration form will be anonymised.

In addition to the right to retract your expression of consent, you have other rights to act on with regards to SHM’s collection of your medical data. These are:   

• Right to object:  this right applies if you think you never gave permission to SHM to use your treatment data for scientific research. If you object, SHM will stop collecting your treatment data. Your personal data from the registration form will be anonymised.
• Right to make  adjustments or edits: you call on this right if your personal data is incorrect or incomplete, by communicating the changes to the HIV specialist or nursing consultant. The changed or supplemented personal data in your medical file will be processed by the data collector in the national SHM database.
• Right to restriction of processing; the right to (temporarily) stop processing your personal data. You can indicate to the HIV therapist or nursing consultant that you are withdrawing your permission temporarily, your treatment data will no longer be collected by SHM. Your personal data from the registration form will be anonymised.
• Right to inspection; You have the right to view your (personal) data. SHM cannot give you direct access to the national SHM database because your data is collected and stored in encrypted form. However, you can view the data  in your medical file by the HIV therapist or nursing consultant.​​​​​
• Right to data transfer; you have the right to transfer your data to another party. SHM cannot transfer your data, because your data is encrypted and stored in the national SHM database. However, you can transfer your data from your medical file.

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 and how we protect your data once you have provided an expression of content 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@amsterdamumc.nl.