The Public Health Service of Amsterdam carefully processes personal data in accordance with current laws and regulations. This page provides information about how we guarantee your privacy while using the ICECREAM online support application and ICECREAM website as well as while participating in the ICECREAM study. You can find out more information about the data we collect and what we do with your data on this page. It is important that you please read this page carefully.
Because laws may change and other developments in privacy protection can occur, the Public Health Service may change its procedures. This may also involve changes regarding the collection of your personal data. We recommend that you regularly check this page to keep you informed of any updates. At the bottom of this document, you can find when this page was last updated.
The ICECREAM project is an initiative from the Public Health Service of Amsterdam. The Public Health Service of Amsterdam is held accountable for data protection as regulated by the General Data Protection Regulation (GDPR). This means that the Public Health Service of Amsterdam decides which personal data are processed, what the purpose of data processing is, and how data are processed.
Why are we collecting personal data?
The ICECREAM study aims to reduce the risk of hepatitis C reinfection among men who have sex with men. During your participation in the study, we collect, use and store your personal data and bodily material in order to carry out this research. In addition, we will need your personal data to contact you regarding any hepatitis C test results if you are assigned to an intervention with additional testing.
Whom do we collect personal data from?
We collect personal data from persons who have provided informed consent to participate in the ICECREAM study.
What is the legal basis for the use of your personal data?
The Public Health Service of Amsterdam is responsible for processing your personal data in agreement with the GDPR (article 9m, paragraph 2, subsection a, General Data Protection Regulation). While participating in the ICECREAM study, any processing of your personal data falls under the Medical Treatment Contracts Act and the Public Health Act. This means that the Public Health Service of Amsterdam protects your privacy and that your personal data will not be shared with others without your consent, unless it is legally obliged. Your personal data will only be used for the purpose of collecting personal data.
Which personal data do we store?
We define personal data as information that is traceable to a person. We store the following personal data:
- Your contact information (name, email address, telephone number, address).
- Information on your identity (date of birth, gender, ethnicity).
- Your demographic data (gender, age).
- Information on your medical history (whether you have had infections with HIV, STIs, blood-borne diseases, use of medication such as PrEP).
- Information on your psychosocial health (alcohol and drug use).
- Information on your sexual life (sexual behavior, gender identity).
Information about your name and address will only be used if you are assigned to an intervention with additional testing in order to process test kits orders. Telephone numbers will be used to contact you in case of a positive hepatitis C test result. Email addresses will be used:
- To send you a message with regards to your ICECREAM account.
- To notify you that the ICECREAM questionnaire is available.
- To confirm orders (for participants who have been assigned to an intervention with additional testing).
- To notify you that a hepatitis C test result is available and to remind you that the hepatitis C tests can still be used (for participants who have been assigned to an intervention with additional testing).
- To send you reminders of the items stated above.
- To make sure that the ICECREAM online support application works properly.
- For authentication and authorization so that the online support application knows who you are and what you have access to.
Which bodily material do we keep?
We keep blood spot cards at the Amsterdam UMC, location AMC, where they will be tested.
How do we protect your privacy?
To protect your privacy for this research, we encrypt your personal data and bodily material with a code. The key to the code is kept securely at the Public Health Service of Amsterdam and is only accessible by authorized persons. The data that will be used contain only the code and not your name or any other information that could directly identify you. If you are assigned to an intervention with online support, this means that the collected data from the surveys and user behavior of the ICECREAM online support application will be stored separately from your personal data. If you are assigned to an intervention with additional extra testing, information on the use of the test service and test results will be stored separately from your personal data. In reports or publications about the study, the data reported will not be identifiable.
Who can view your personal data?
Some people can view your name and other personal information without a code. This is required if we need to contact you or to check whether the study is being performed properly or reliably. Personal data will be transferred between the inclusion site and the Public Health Service of Amsterdam through secure e-mail. Persons who can view your personal data are the coordinating researchers and the data managers, only if necessary. They will keep your personal data confidential.
How long do we keep your personal data and body material?
All personal and medical data collected for this research must be stored in coded form for 15 years. Personal identifiable data (name, address, date of birth, email, telephone number) will be kept for 5 years so that, if necessary, additional analyses can be done, as mentioned in the participant information brochure. Bodily material from the blood spot cards will be kept for 1 year.
After these terms have expired, your personal data and materials will be destroyed.
Can we use your personal data and bodily material for other research?
Your coded data and your blood spot cards may also be important for other medical research on hepatitis C, HIV or other STIs. In the consent form, you will have indicated whether you give permission for the use of your data in other studies. If you don’t want to give permission to do so, you can still take part in this study.
Your personal data will not be sent to a country outside the European Union.
What are your rights?
You have the right to view, correct, and delete your personal data. You also have the right to withdraw your consent for data processing or to object to the processing of your personal data.
Do you have questions about your rights? Or do you have a complaint about the processing of your personal data? Then contact the ICECREAM research team. You can also contact the data processing officer from the Public Health Service of Amsterdam.
Contact details Public Health Service of Amsterdam
Data processing officer: firstname.lastname@example.org
You can also submit a complaint to the complaint office of the Public Health Service of Amsterdam:
Phone: 020-555 5218
By mail: GGD Amsterdam, t.a.v. de klachtencoördinator, Postbus 2200, 1000 CE Amsterdam.
Would you like to know more about your rights and how personal data are processed? Then please take a look at www.autoriteitpersoonsgegevens.nl. You can also submit any complaints via this website.