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Privacy & Security

SHARE–The Scottish Health Research Register is part of the infrastructure of NRS Scotland and is funded by the Chief Scientists Office Scotland.

This privacy policy covers all the information provided on the website and the registration pages for the SHARE register. It describes the information SHARE collects when you or your computer interacts with the website, and how SHARE uses that information.

By visiting the website and/or by supplying any personal data, you are accepting and consenting to the practices described in this policy. If you do not agree with these terms, then do not use this website or its resources.

Section 1- What do we do with your information.

  • The SHARE Database only holds the information you provide when completing your registration;
    • Name
    • Date of birth
    • Postcode
    • Phone/ email 
  • This data is held within an accredited “safe-haven” within the NHS, and only used to re-contact you for research projects as you have given us permission to do.
  •  You have also given SHARE “permission to interrogate your health records using coded data.”

 To explain how this works;

Your electronic health records are held within the NHS secure databases. When you sign up to SHARE, your record is “flagged” to say you are happy to be invited for research through SHARE.

When SHARE receives a study application, this study undergoes careful scrutiny by an access committee of doctors and researchers to see if it is a good and useful research project. Once this is approved, we then look for people who might be suitable from the SHARE register.

For example, if the study is looking for people who have asthma, and are on salbutamol inhaler. The ICD-10 code for asthma is J45, and BNF code for salbutamol is 3.1.1.

 The data managers within the safe haven will ask the NHS database to find people who have these codes in their health records. So if you have asthma, and are taking the blue salbutamol inhaler regularly, your name will be sent to SHARE as a possible match.

SHARE recruiters will then contact you, explain the study and ask if you are keen to talk to the research team. Only if you say yes, will your name be passed on. If you are not interested then you can just say no. 

  • We also take your permission when you join SHARE, to allow us to keep any blood left -over following routine clinical testing. This is not automatic; you have to tick the box to give us this permission. The bloods are stored and researched in an anonymized manner. Your identity will not be known to any of the research team. Further information is in our “any questions” section of the website.

Section 2- Hosting

Our site and apps are hosted by MTC Ltd. They store your data on a secure server behind a firewall. The data is shared with the NHS safe haven Health Informatics Centre (HIC) to process registrations and consolidate with NHS Scotland records.

Section 3- Third party services

The third-party providers, Google Analytics, used by us,  will only collect and use information to the extent necessary to allow them to perform the analytical services they legally and transparently provide to us.

For example, when a news article is uploaded onto the website we may use Google Analytics to track the interaction with this post to evaluate how many people read these articles. This data helps us to know which articles/ adverts are more effective in promoting SHARE.

Links

When you click on links in chats, they may direct you away from our apps. We are not responsible for the privacy practices of other sites and encourage you to read their privacy statements.

Section 4- Security

To protect your personal information, we take reasonable precautions and follow industry best practices to make sure it is not inappropriately lost, misused, accessed, disclosed, altered or destroyed.

Section 5– Changes to this Privacy Policy

We reserve the right to modify this privacy policy at any time, so please review it frequently. Changes and clarifications will take effect immediately upon their posting on the website. If we make material changes to this policy, we will notify you here that it has been updated, so that you are aware of what information we collect, how we use it, and under what circumstances, if any, we use and/or disclose it. If SHARE is merged with another government credited health research entity, your information may be transferred so that we may continue to use the registration information for research.

Section 6- Questions and Contact

If you would like to access, correct, amend or delete any personal information we have about you, register a complaint, or simply want more information you can contact our Privacy Compliance Officer at enquiries@registerforshare.org or by mail at:

Scottish Health Research Register

School of Medicine, Mailbox 12, Level 5,

Centre for Pharmacogenomics and Pharmacogenetics,

Ninewells Hospital and Medical School,

Dundee, DD1 9SY