Patient data collection

Collecting data is a crucial part of routine health care for HIV patients. Treatment data for all HIV patients receiving care at any of the treatment centres are collected and stored in the SHM database. The foundation manages this database and oversees the correct use and access of data. SHM also grants permission to HIV research groups to use specific data for research purposes and ensures the quality of information disseminated. HIV treating physicians also have access to data and can receive tailor-made information that can be used to progress the level of patient care at their treatment centre. More information about the guarantee of patient privacy, entry in the database, and discontinuation can be found in the Patients section. 

How are the data collected?

The patients’ data are collected at HIV treatment centres by data collectors. They are partially staff of the treatment centre and partially staff of SHM. Confidentiality of data is guaranteed.

Which patient data are collected?

The SHM data collection contains the following information:

  • Registration data:
    These data are collected during the first visit at the outpatient clinics and includes information such as birth date, date of last negative and first positive HIV tests, route of infection, and smoking, alcohol and drug usage.
  • Follow-up data:
    Data, including clinical data, are collected on a continuous basis every time the patient is seen by the treating physician. This includes such information as the treatment, symptoms of disease, and laboratory results.
  • Data from HIV-infected children:
    Additional data are obtained from HIV-infected children.
 
 

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Stichting HIV Monitoring

SHM, the Dutch HIV monitoring foundation, makes an important and necessary contribution to healthcare for HIV-infected people living in the Netherlands. Through the collection and maintenance of anonymous data from HIV-patients throughout the country, our work contributes significantly to the knowledge of HIV and enables treating physicians to assess and improve patient care. Our yearly monitoring report provides valuable input for the development of HIV care and prevention policies within the Netherlands and the EU.