Conversations about your data

Conversations about data

You can join the conversation now by starting a new thread, commenting on a topic that has already been suggested or liking a comment that has been made by someone else.

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

Find out more

Respect others

Here's our quick guide to taking part in conversations

Do

  • Search first - someone else might have already asked the question; if they have why not add to the discussion by commenting rather than starting a new discussion
  • Post once, not often - choose a topic for your question or comment and post it once. Posting the same question in multiple threads or topics can be confusing
  • Be respectful at all times
  • Every view is valid - but not if it is a personal attack, degrading, insulting or falls within any of the "Don'ts" below

There are a few don'ts

  • No Spam/advertising /promotions
  • No sharing of personal details - everyone can remain anonymous if they want to
  • No copyright-infringing material
  • No offensive posts, links or images

Any material which constitutes defamation, harassment, or abuse is strictly prohibited. Material that is sexually or otherwise obscene, racist, or discriminatory in any way is not permitted. 

 

Join the discussion

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

Anonymous
Back to top

How do I know that my data will be truly anonymous and that my
personal and health details can't been seen by people I don't know?

Anonymous
23 Feb 2023 16:00 Back to top

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.  

Post a Reply

*This forum allows anonymous threads and replies. Leave the email field blank if you wish to remain anonymous.