Information about the use of personal data in the MINDMAP study

The aim of the MINDMAP project is to identify the opportunities offered by the urban environment for the promotion of mental wellbeing and cognitive function of older individuals in Europe. To achieve this, we will use data from 10 ongoing longitudinal ageing studies across more than 16 cities in Europe, Canada and the United States. If you were a participant in one of the involved cohort studies, you can find more information below on how we handle your data in the project. When you were participant in one of the cohort studies, but you don’t want your data being involved in the MINDMAP study, you can withdraw, without giving a reason, by using the contact form (click on this link).

  • Which personal data of participants is in the database? Information on:
    1. Mental well-being and cognitive functioning outcomes (e.g. depressive symptoms and word recall test)
    2. Sociodemographic variables (e.g. gender, educational level)
    3. Health behavior characteristics (e.g. smoking and alcohol consumption)
    4. Social factors (e.g. social cohesion and social support)
    5. Physical function indicators (e.g. ability to walk or climb the stairs)
    6. Chronic conditions (e.g. diabetes and hypertension)
    7. Soluble biomarkers ( e.g. vitamin D) and genetic markers (e.g. APOE gene)
    8. Urban characteristics (e.g. access to green, neighborhood urbanicity)
  • Where will personal data be stored?
  1. The Central MINDMAP database is located in Rotterdam (NL) at the Erasmus MC. This is the primary data server containing datasets from studies whose policies allow the physical transfer of data to a third party under certain strict circumstances.
  2. On secondary data servers in institutions from cohort studies with data sharing restrictions.

  • Who have access to the data?
    • Authenticated MINDMAP staff and investigators.
    • An analysis server is being installed running RStudio, allowing authenticated MINDMAP researchers to remotely access each firewall protected data holding server. This central analysis server allows MINDMAP staff to remotely and securely harmonize data and subsequently allows investigators to conduct on-demand analyses of geographically distributed firewall-protected databases.
    • The individual data from the cohort studies will be anonymized before they will be shared on the secure data infrastructure.
  • How is my privacy guaranteed?
    • Technical security measures:
      • Web security techniques are used (e.g. SSL certificates) that are also used for internet banking and e-commerce worldwide
      • All communication between the server and users is encrypted with end-to-end encryption
      • All data is stored at a secure server with a strict firewall
    • Data access restrictions:
      • Directly identifying data (such as names and addresses) are not on the server
      • Data is only accessible to authenticated researchers who adhere to strict privacy rules
      • Data cannot be downloaded from the server (other than by the data-managers of the original studies)
  • How is the anonymization process done?
    • Directly identifying data such as names and addresses are removed before the data is stored on the data server.
    • Addresses are needed to derive the urban characteristics. However, the addresses are never shared in combination with any personal data. The urban characteristics and the personal data are linked together via a detailed protocol. This protocol ensures that nobody, except the data manager of the cohort study, will ever have access to addresses in combination with any personal data. In short, the protocol has 6 steps:
      1. The data manager of the cohort study gives a second unique ID code (UID2) to all participants in addition to the original ID (UID1). He removes all personal data except the residential locations (RL) such as address or postal codes, UID2 and the dates of the assessment (dates when the surveys were administered). If preferred, random addresses (dummy RL) and ID codes (DUID) will be added to this sample.
      2. The link file with the UID2, the assessment dates and the residential locations will be send to the MINDMAP data manager
      3. This link file is used by the MINDMAP data manager to derive al urban characteristics for the different time points.
      4. One file will be created that contains the UID2, the assessment dates, residential locations and all urban characteristics.
      5. The combined file including the urban characteristics is send back via a secure file transfer to the data manager of the cohort study. The data manager of the cohort study will link the urban characteristics to all other personal data via UID2.
      6. The data manager will remove UID2 and all directly identifying data such as the addresses to anonymize the dataset. This anonymized dataset will be securely uploaded to the secure data-holding server.