Conversations about your data

Conversations about data

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All of these conversations will help to shape how we use data for research as part of the new East Midlands Secure Data Environment.

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Viewing Thread: How do I know my data will be truly anonymous? Show all threads

Anonymous
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The participant information sheet should explain in detail how your
personal information will be looked after.  All research studies need
to comply with data protection and with GDPR (General data protection
regulation) so there are strict legal policies in place to help
protect your data.  Each person that takes part in a research study is
given a unique identifier that is assigned to your data so it keeps it
anonymous.  It should be made clear in the information that you are
given at the start of a study though that your personal contact
details for follow up purposes will also be held but stored in a
different locked area than the rest of the data you provide. Data is
always kept in a lockable unit behind a lockable door with limited
access.  Databases are password protected and encrypted, again with
limited access.  Data is sent via strictly via encrypted methods to
ensure data security. The participant information sheet will also tell
you who will have access to your data and for what purposes e.g. the
study coordinators to enable follow up appointments, the centre
conducting the study will receive a copy of your consent form with
your name and your contact details, the centre overseeing the research
will have access to your data to ensure that it is accurate and is
being properly stored.  External agencies such as the MHRA (Medicines
and Healthcare products Regulatory Agency) can also access your data
again to check the organisation storing and managing your data are
doing so in an appropriate manner. If there is a breach of your
anonymity then you will be contacted by the organisation holding your
data and the breach and the consequences for yourself and the
organisation that breached your anonymity explained in full. 
Generally, the risk to your data is very low within the UK and Europe
due to strict policies and guidelines.  However, there is more risk if
your data is to be sent to countries without strict data protection
legislation.  If your data is to be sent internationally, you should
be made aware in the participant information sheet and again details
of how it will be kept secure will be detailed.  

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