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. On behalf of the RIVM infectious disease control center (Cib), SHM collects data for the purpose of national HIV monitoring to gain insight in the HIV epidemic and HIV treatment in the Netherlands.

Therefore, medical data of 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 the database and monitors access to the database and use of the encrypted data. 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.

SHM grants permission to HIV research groups to use specific data for research purposes, if they meet strict legal and ethical requirements. Also specific data is shared in national and international collaborations contributing to the improvement of HIV care in the Netherlands.

SHM does not share data with commercial organizations, such as insurance companies or pharmaceutical companies.

Once you have given your explicit consent, SHM receives a digital registration form through the registration application with the indication of a written and/or oral explanation and the personal data below:

• date of birth;
• initials (max. 2 letters);
• gender;
• nationality and country of birth;the 4 numbers of your postcode (not letters);
• data from an earlier registration with SHM, if you have previously attended another HIV treatment centre;
• hospital registration number.

Your registration data will be saved under a unique code number that cannot be directly traced back to you as a person.

Using this code number, the data collector will periodically collect your medical data, which are separately stored from your registration data. These are data relating to your medical history (including medical data of earlier HIV centres if applicable), your HIV diagnosis, your treatment, the progress or course of your infection, and any other directly or indirectly related infections and diseases.

You are also giving consent to the use of relevant provisions obtained from blood samples taken during the course of your treatment, including medical data from leftover blood samples material stored in the laboratory.

If you are pregnant, then the information recorded in your file on your pregnancy, the birth, and some birth data about your baby that are relevant to HIV monitoring will also be collected.

An extensive list of all the data that are collected can be found on our website.

SHM shares data in collaborations and studies that contribute to SHM's mission. In the interest of SHM’s national HIV registration and monitoring function, SHM may also use additional, not directly tracable, data from other databases/ sources. More information can be found here. 

SHM does not provide data to commercial parties such as insurers or pharmaceutical companies.

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.
• SHM employees only have access to the data that they are allowed to access to perform their duties.
• Your registration data 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 NEN7510 and ISO27001 certified.
• 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 researchnumber. This data will be securely shared and destroyed upon completion or termination of the research.
• Exchange of data is always encrypted so that privacy is optimally protected.
• The data processed in publications of research results are anonymous and cannot be traced back to an individual.

Commissioned by the Center for Infectious Disease Control (Cib) of the RIVM, your data will be stored for as long as the national HIV monitoring program in the Netherlands is ongoing. The medical data obtained from the material left over from your samples can be used for medical research for the duration of HIV monitoring in the Netherlands.

Medical data, which are shared with research institutions, are destroyed after completion of the research.

If you do not give consent, then only basic data will be registered so that the correct number of HIV infections in the Netherlands can be reported to Cib-RIVM. These data are:

• year of birth;
• gender;
• born in the Netherlands: yes/no.

These basic data are registered by SHM under a unique code number.

All other data, including your medical information, will be deleted from the SHM database after 30 days and can only be found in backup files within the secure environment of Amsterdam UMC for a maximum of an additional 14 days.

In your medical file within the treatment centers, a note will be made indicating that you did not give consent or have withdrawn your consent, and your medical data will no longer be collected. However, a list will be kept by the treatment team with the unique code number and hospital registration number, so that SHM knows you are included in the count of HIV infections in the Netherlands, which SHM must report to the Cib-RIVM. This prevents the need to frequently check your medical file for this purpose.

You can withdraw your consent to the use of your medical data by SHM at any time. You can express this to your treatment team without any affect on your treatment at the treatment centre.

You will be deregistered from SHM via the registration application, after which SHM will stop collecting medical data and your registration data will be changed to the basic data below:

• year of birth;
• sex;
• born in the Netherlands yes/no.

In addition you have other rights you can exercise through your treating physician. These are:   

• Right to object:  this right applies if you think you never gave permission to SHM to use your medical data for scientific research. If you object, SHM will stop collecting your medical data. Your personal data from the registration form will be replaced by basic data (see above).
• 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 specialist or nursing consultant that you are withdrawing your permission temporarily, your medical data will no longer be collected by SHM. Your personal data from the registration form will be replaced by basic data (see above).
• 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 specialist 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 briefly describes what SHM's work entails and how we guarantee your privacy and security.
   
• Our patient information letter, which is also available at the treatment center, contains information about sharing your data with SHM and how we protect your data.
   
• Detailed information can be found on this website.

If you have a complaint or a privacy question, you can discuss this with your HIV treating physician or HIV nursing consultant or you can contact the DPO of SHM:

SHM
Data Protection Officer
Tafelbergweg 51
1105 BD Amsterdam

Phone: 020 566 4172
Email: privacy.shm@amsterdamumc.nl
Kvk number 34160453

If you are not satisfied with the way your rights have been handled, you can always submit a complaint to the Personal Data Authority:  www.autoriteitpersoonsgegevens.nl.