Privacy Statement

Information about you: how we use it and with whom we share it

The information you provide will be used by the REACH Team to identify whether you match the criteria for an asthma research study which has been approved by the REACH Steering Group.  If your details match what the researchers are looking for, your name and contact details will be shared with the research project team.  The researcher will then be able to contact you to ask if you would like to participate in their research study.  Your participation in each study is entirely voluntary. 

We are using information about you because you have given us your consent.

Information about you will be shared with researchers undertaking asthma research studies which have been approved by the REACH Steering Group.

We will hold the personal data you have provided us in a highly secure server at the University of Edinburgh until you withdraw your consent for us to process your personal data.  Only authorised staff on the REACH Team, who have completed the appropriate data security and data governance training, will have access to this database.   

We do not use profiling or automated decision-making processes.

If you have any questions, please contact the REACH Team by email ReachUK@ed.ac.uk

This privacy statement is continued (continued privacy statement)

Data Linkage

In due course, our aim is to be able to link relevant information provided in this database securely to participants’ GP health records and other routinely collected social, economic, and genetic data sets in the UK. If you consent to your data being linked, it will allow the REACH Team to undertake more robust and comprehensive investigations into the potential causative and preventive factors for asthma. Importantly, by consenting to your data being linked, only the REACH Team is given permission to undertake more robust investigations with your de-identified data.

If an asthma researcher proposes a data linkage study with the REACH database, they will have to go through the same approval processes and procedures as all third party research studies (further details below). 

The information you provide will be kept indefinitely unless you decide to withdraw, which you can do at any time by emailing the REACH Team. If you withdraw, your information will be removed from the database.

Data Linkage with Third Parties

Third parties (asthma researchers) that propose a data linkage study with the REACH database must be approved by the REACH Steering Group. If you match the data linkage study criteria, your contact details will be shared with the researcher.  The researcher will approach you for your consent to participant in order to be included in the approved data linkage study.

Approval of data linkage studies and seeking of consent from people registered with REACH will be done on a project specific basis and will involve pre-selected databases (e.g. GP records, Population census, education, modelled environmental exposures), with the aim to provide a better opportunity to understand the burden and prognosis of asthma at the population level.

The data linkage will be done in a secured environment provided by the University of Edinburgh Safe Haven infrastructure and/or the National Safe Haven environment (NSS-eDRIS). Approved researchers seeking to analyse linked data will be required to apply for and gain access through a secure link for only de-identified datasets. 

© 2015 AUKCAR