Data Sharing

 

Patients should be aware that some of their medical data will be shared anonymously with NHS Lothian and NHS Scotland as well as two medical research organisations, as noted below. These bodies use information from GP Surgeries to help with various clinical research projects as well as NHS resource planning. The security of your data is of primary concern when it comes to the sharing of any confidential information, and all data is shared securely, encrypted and anonymised where appropriate.

All of the services mentioned below work on an opt-out basis, so you will need to inform us if you do not wish for your data to be included. Simply ask at reception and they will pass your wishes on to the Practice IT Department. Depending on which service(s) you wish to opt-out of, you may be asked to complete and sign a disclaimer form.

THE EMERGENCY CARE SUMMARY (ECS)

The emergency care summary shares information including your name, date of birth, your current GP surgery and information about any medication you are currently being prescribed along with details of any drug allergies or reactions that you had, that your GP knows about.

This information is only made available to hospital accident and emergency departments, staff at out-of-hours medical centres or those who work with NHS 24 and are involved in your care.

Anyone who needs to view Emergency Care Summary to treat you must ask your permission before they look at the information. However, if you are unconscious, they may look at your Emergency Care Summary without your agreement.

You can find out more about the ECS at the following website:
http://www.gov.scot/Resource/Doc/143714/0036499.pdf

THE CLINICAL PRACTICE RESEARCH DATALINK (CPRD)

The Clinical Practice Research Datalink (CPRD) is a governmental, not-for-profit research service, jointly funded by the NHS National Institute for Health Research (NIHR) and the Medicines and Healthcare products Regulatory Agency (MHRA), a part of the Department of Health.

For more than 25 years, hundreds of GP practices across the UK have contributed information in patient records to the CPRD to support medical research to improve patient and public health

Only anonymised patient data is provided to researchers. CPRD never receives any personal identifying details from your GP such as your name, address, CHI number or date of birth. Data can only be used for research to improve patient and public health, and all research applications must be reviewed and approved by an expert independent scientific committee.

CPRD is reviewed each year by the Health Research Authority, the Multicentre Research Ethics Committee and NHS Digital to make sure its services meet ethical and legal requirements.

Data is held securely by CPRD and researchers most follow strict terms and conditions when carrying out any research.

You can find out more about CPRD at the following website:
https://www.cprd.com/public/

THE HEALTH IMPROVEMENT NETWORK (THIN)

THIN is a collaboration between Vision and Cegedim Heathcare Software, and like CPRD, collects anonymised patient data from GP clinical databases.

THIN’s electronic data is supplied to the medical research community, who service the world’s leading pharmaceutical companies, universities and medical research organisations.

The data THIN collects is anonymised prior to leaving the practice during the data collection process – this ensures that all patient identifiers, such as name, address, date of birth, post code, CHI number, etc. are NOT collected. The patient is known only by a code number and cannot be identified outside the Practice. The Department of Health’s South East Multicentre Research Ethical Committee has approved the THIN scheme.

You can find out more about THIN at the following website:
https://www.iqvia.com/locations/uk-and-ireland/thin

THE SCOTTISH PRIMARY CARE INFORMATION RESOURCE (SPIRE)

SPIRE (Scottish Primary Care Information Resource) is the newest of these services and has been developed to help GPs, the NHS in Scotland and researchers to learn from information held at GP practices.

SPIRE allows information from GP patient records to be transferred electronically and held securely at NHS National Services Scotland, the NHS Scotland organisation responsible for health statistics. It uses information from GP practices all over Scotland in a safe and secure way.

Certain information from your GP patient records will be used, such as your date of birth, gender, vaccinations, diagnoses and prescribed medicines. SPIRE will only use the information that is needed for the purpose of the analysis. No notes your doctor or nurse has made from discussions you have had with them will be used and no information leaving your GP practice will have names or personal details on it.

To protect your confidentiality, these details will be encrypted before they leave the GP practice so you can be confident that your information is secure at all times.

The information will be used by trained and authorised analysts at NHS National Services Scotland, the NHS Scotland organisation responsible for health statistics. Some NHS Scotland organisations such as Health Boards will be able to request information to perform their own analysis, for instance, to understand what is happening within local services. Health researchers from outside the NHS Scotland (for example, charity or university researchers) will have to apply to the independent SPIRE Steering Group if they want to use information from GP records. All requests for information will have to be approved by this independent SPIRE Steering Group. There are strict rules governing how information is managed and all staff involved have a legal duty to keep information safe and secure.

You can find out more about SPIRE at the following website:
http://www.spire.scot