Any information we collect from you will be kept confidential and stored in a highly secure server at the University of Edinburgh. Only authorised staff on the REACH team, who have completed the appropriate data security and data governance trainings, will have access to this database.
A steering group has been set up within the Asthma UK Centre for Applied Research whose mandate is to monitor the operation of the database to ensure it conforms to the UK safety and privacy regulations.
Your participation in this database is entirely voluntary. If you register with the database, your information will be stored securely in a server at the University of Edinburgh. If you fit within the criteria for an asthma research study that is approved by the REACH steering group, the REACH team will contact you directly with information about the particular asthma research study. Only if you are interested in participating in the study and give your consent, then your identifiable information will be securely sent to the asthma researcher. When securely sending your identifiable information, your health information will be separated from your identifiable information in two separate, secure files. The asthma researcher will be sent a secure key to enable them to match health information with identifiable information. The researcher will then be able to contact you to participate in their research study, which has been reviewed and approved by the Asthma UK Centre for Applied Research.
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. Third party data linkage is described further below.
The information you provide will be kept indefinitely unless you decide to withdraw, which you can do at any time by emailing or calling the REACH team. If you withdraw, your information will be removed from the database.
Third parties (asthma researchers) that propose a data linkage study with the REACH database must be approved by the REACH steering group. Individuals registered in the REACH database who fit the criteria for the data linkage study will be approached by the REACH team and must agree to participate and consent 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 preselected 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.