Trusted Data Linkage Service
Overview
The NHS Trusted Data Linkage Service is part of the NHS Information Centre. It has been developed to provide researchers with access to high quality heath care data whilst maintaining patient confidentiality. The service is underpinned by robust data standards.
A range of data linkage services are provided including the linkage of person identifiable datasets into an anonymised format. This process effectively reduces the IT security level needed to carry out research, minimises the time and skill level needed by a researcher to successfully link datasets and improves the potential for health related research which might otherwise not have been possible.
Typically, access to patient identifiable datasets where patient consent has not been granted requires approval from the National Information Governance Board for Health and Social Care Ethics and Confidentiality Committee (ECC), which is a separate body from the NHS Information Centre. Note that the process of applying and gaining ECC approval may take some time (please see Access section below for more information on making an application to the ECC).
The linkage of Hospital Episode Statistics with other datasets is the most commonly requested and used.
Key benefits of the Trusted Data Linkage Service
The Trusted Data Linkage Service can assist researchers by:
- Removing the need for researchers to receive or hold person identifiable data
- Making applications for Hospital Episode Statistics data.
- Seeking Ethics and Confidentiality Committee approval.
- Carry out linkage algorithm development.
- Delivering linked datasets securely.
- Having a proven data collation and linkage capability
- Providing access to specialist information knowledge and Information Governance advice
Technical Guidance
Section 251 of the NHS Act 2006 allows the common law duty of confidentiality to be set aside in specific circumstances where anonymised health datasets are not sufficient and where patient consent is not practicable for the purposes of research.
Examples of linked data research
The Trusted Data Linkage Service removes the need for researchers to hold identifiable data. As such, research using patient health datasets has improved and become more accessible.
For example, the service was used by the Nuffield Trust to link cohort data to HES so that they can carry out an evaluation of community based interventions. It has also been used by the Department for Transport to link their road traffic injury database to Hospital Episode Statistics to create a rich dataset on accident circumstances and medical diagnoses.
Accessing the Trusted Data Linkage Service
Any application to link patient identifiable datasets requires approval from the Ethics and Confidentiality Committee, which is part of the National Information Governance Board for Health and Social Care. You can make your own application or alternatively the Trusted Data Linkage Service can make this application on your behalf for a fee.
Please note that the ECC meet six times a year to discuss applications. Applications must be submitted at the very latest approximately one month prior to the next ECC meeting. Meeting dates and application cut off dates can be found on the NIGB website.
ECC approval – Submitting your own application
** It is strongly recommended that you contact the Trusted Data Linkage Service in the first instance to discuss your requirements and application to link data **
If you wish to submit your own application for ECC approval, please first read the application and guidance notes contained on the National Information Governance Board for Health and Social Care website at www.nigb.nhs.uk/ecc/applications.
You will also have to meet the NIGB standard conditions of approval and evidence a variety of security and confidentiality conditions. Details are on their website.
To then make an application for ECC approval you must then go to the Integrated Research Application System (IRAS) website (www.myresearchproject.org.uk/SignIn.aspx) and complete the online form. The IRAS is a single online system for applying for the permissions and approvals for health and social care / community care research in the UK.
With your application you must also include a completed System Level Security Policy form to outline your organisational confidentiality and security arrangements and state that the Trusted Data Linkage Service would be the data processors.
Further details are available on the NIGB website. The NHS IC SLSP will also have to be submitted with any ECC application to allow them to carry out the linkage. This will be supplied to you at the time of application.
There is also a fast track application process for certain types of health data. The criteria are contained on the NIGB website.
If you are applying to link Hospital Episode Statistics data using the Trusted Data Linkage Service then you do not need to apply separately for this data.
ECC approval – Trusted Data Linkage Service application
The Trusted Data Linkage Service can apply for ECC approval on your behalf.
If you are applying to link HES data as well then the Trusted Data Linkage Service will obtain the HES data on your behalf. Please note that there are fees for these services. Further details can be obtained by contacting the Trusted Data Linkage team using the contact details below.
On receipt of ECC approval
If your ECC approval is successful then the Trusted Data Linkage Service will be able to start work on linking the datasets that you need. The Trusted Data Linkage Service will be able to advise you on the acceptable format and secure delivery of your data files to them.
The time that it takes to complete the data linkage request depends on the time that:
1. The ECC take to approve your request and the time that it takes to obtain HES data.
2. The time it takes the Trusted Data Linkage Service to obtain HES data (approximately 12 weeks at present).
3. The time it takes to link the data which will depend upon the complexity of your request.
Your linked dataset can be sent securely, emailed or posted to you. Data files sent to the Trusted Data Linkage Service are destroyed.
Considerations
It is advisable to contact the Trusted Data Linkage Service to discuss your requirements and costs prior to submitting your applications.
Section 251 approval is not required if you have patient consent. However, the NHS IC requires the consent to be explicit about linking to NHS IC data so the Trusted Data Linkage Service will often refer customers to the ECC for a decision on whether the consent form is adequate. If it is then no 251 approval is needed.
Please bear in mind the time that it will take to receive ECC approval and the time it will take for the Trusted Data Linkage Service to perform the data linkage.
Patient identifiers will not be returned so you need to ensure that each record has a unique identifier.
You will also need to receive permission to link datasets from the data controller who holds the dataset to be linked to a health dataset.
Typical patient identifiers that the Trusted Data Linkage Service can link on include surname, date of birth, NHS number, gender and postcode.
Further information
For further information about the Trusted Data Linkage Service or to enquire about making an application please call 0845 300 6016 or email enquiries@ic.nhs.uk quoting ‘data linkage’.
You can also download the ADLS NHS Information Centre PDF pack here which also contains a flyer for the Trusted Data Linkage Service and a copy of this information.
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