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.
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;
- Date of birth
- 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 “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.
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 6 – Withdrawal from the SHARE Register and Biobank
You are free to withdraw from the SHARE Register and Biobank at any time without giving a reason.
This will not affect your normal care. If you wish to withdraw you need to contact the SHARE Team using mail, email; [email protected] Telephone ; 01382 383230 / 01382 383471 or the SHARE Website; www.registerforshare.org/contacts (online form).
However, we need to know if you wish to:
1. Withdraw from contact
I no longer wish to receive newsletters and invitations to take part in research studies.
2. Withdraw from spare blood collection
I no longer wish to have any leftover blood samples collected following routine clinical testing, any samples stored within the SHARE Biobank will be flagged for disposal (where possible*).
3. Have your details removed from the register which includes removal of any stored blood samples.
I do not wish to be contacted by email for newsletters or specific health research studies that I may have been suitable for. My details will be removed from the SHARE register and I will receive no further contact. I do not wish to have any leftover blood samples collected following routine clinical testing, any samples stored within the SHARE Biobank will be flagged for disposal (where possible*).
*However it is possible that samples may already have been issued to researchers and we may not be able to take further action.
Please can you email us ([email protected]) or call us (01382 383471/383230) to give us further information and we will act as per your request.
We will need your full name and postcode to identify your registration.
Section 7- 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 [email protected] 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
SHARE and Biobank Ethical Approval
The South East of Scotland Research Ethics Committee (REC) 2 has examined the proposal and has raised no objections from the point of medical ethics. This approval covers all of Scotland.
The approval letter can be accessed here : SHARE and Biobank Ethical Approval Letter.