Maternity Services Data Set information governance and fair processing guidance

This guidance describes the MSDS and contains suggested fair processing information for including with existing patient information material.

This is to comply with the requirements of the common law duty of confidentiality, the Data Protection Act 2018, the General Data Protection Regulation (GDPR), NHS Constitution and the Department of Health and Social Care’s Directions to NHS Englandl, formerly known as the HSCIC, issued in 2015, 2017 and 2018 on upholding patients’ national data opt out preferences.

The suggested fair processing information should not be produced as a separate information leaflet for patients and should be incorporated into existing material wherever possible.

NHS England has been directed by the Secretary of State for Health and Social Care under section 254 of the Health and Social Care Act 2012 to establish and operate a system for the collection and analysis of the MSDS information. 

Under GDPR, our lawful basis for processing is Article 6 (1) (c), which relates to processing necessary to comply with a legal obligation to which we are subject. Our lawful basis for processing special category data is GDPR Article 9 (2) (h) and Schedule 1, Part 1 (2) (2) (f) of the Data Protection Act 2018.

A Data Provision Notice (DPN) for the MSDS will be published to enforce the data requirements as per NHS England statutory powers, under Section 259 (1) of the Act.

NHS England has a central reporting system where an anonymised version of the MSDS will be held for reporting purposes. This platform will support the analysis of maternity services data and serve the following purposes:

• anonymised data will be published on the NHS England website and shared with national bodies, allowing the effective monitoring of service standards, including efficiency, equity and effectiveness of service, by policy makers.
• extracts of data will be made available to care providers and their commissioners to allow the local monitoring of service provision, assist with allocating payments and help submitters to improve data quality.
• anonymised data will also be made available at provider level to help to inform a patient's care and treatment choices, for example via the NHS.uk website.

The data held in the MSDS may also be linked to data held by NHS England from various other data sets and collections, including (but not limited to) the Community Services Data Set (CSDS) and Mental Health Services Data Set (MHSDS). The MSDS data may also be linked to external data sources such as Office for National Statistics (ONS) data and data from the National Neonatal Data Set. More information about the data sets and collections that NHS England hold and that may be used for linkage can be found on the NHS England website. Linkage is carried out in order to investigate the relationship between care in maternity services and subsequent activity, such as health visiting and school nursing activity, as well as referrals to neonatal units, mental health services and other services.

As the MSDS data is to be used for secondary care rather than direct patient care, patients using NHS-funded maternity services must be made aware that their confidential data will be used for this beneficial, additional purpose i.e. to improve care.

Acting fairly and transparently ensures compliance with the common law duty of confidentiality, the NHS Constitution and legislation for example the Data Protection Act 2018 and the General Data Protection Regulation (GDPR).

Ensuring fairness is the responsibility of the care provider from which the data will be collected (NHS England has provided some suggested wording later in this document).

Patients must also be informed of their right to set a national data opt-out preference to prevent their confidential patient information from being used for purposes beyond their own direct care and treatment (e.g. for research and planning purposes).   This complies with the Department of Health and Social Care’s Directions, issued to NHS Digital in 2015, 2016 and 2018 on the upholding of patients’ national data opt out preferences.

Providers are legally required to submit full returns of MSDS data, as the DPN that will be issued under section 259 (10) of the Health and Social Care Act 2012 sets aside the common law duty of confidence in respect of this data. However, providers may themselves exclude records where they are subject to any other restriction on disclosure e.g. by other laws.

Patients however do have a right to set a national data opt-out preference to prevent their data being used for purposes beyond their direct care and treatment. Where an opt-out is received from a patient (or their parent or guardian in the case of a child), NHS England will exclude the relevant records from any onward dissemination of the data.

Patients using these services have the right to change their minds about a disclosure decision at any time before the disclosure is made and can do so afterwards to prevent further disclosures.

Further information is available.  

This guidance document complies with the NHS England Code of practice on confidential information.

A key transparency requirement under the GDPR is that individuals have the ‘right to be informed’ about the collection and use of their personal data. The following suggested wording is intended to be incorporated into a hospital's existing information for patients. It does not need to be a separate leaflet.

Controller’s contact details

[Insert your organisation’s name and contact details here]

Data Protection Officer’s contact details

[Insert contact details of your organisation’s Data Protection Officer]

Purpose and legal basis for processing

We collect information about you (your personal data) for the Maternity Services Data Set (MSDS), to help achieve better outcomes of care for mothers, babies and children. The data set collects information about the mother’s demographics (e.g. postcode, date of birth, ethnic category), booking, diagnosis and admission details, as well as details about screenings and tests and labour/delivery.  The data set also collects details about the baby’s demographics (e.g. date and time of birth, sex) and relevant tests prior to discharge from maternity services.

Our lawful basis for processing this data is [insert Article 6 processing condition, Article 9 processing condition and DPA 2018 schedule 1 processing condition]

The data is securely sent to NHS England which is the central organisation that receives the same data from all NHS-funded maternity services across England. NHS England removes all identifying details and combines the data we send with the data sent by other care providers, forming the MSDS.

The data set is used to produce anonymised reports that only show summary numbers of, for instance, patients referred to different maternity services. It is impossible to identify any individual patient in the reports, but the reports do help us to improve the care we provide to you and other patients.

No information that could reveal your identity is used in national reports.

The benefits of the MSDS to you as a patient include:

• making sure maternity services are available to all patients and measuring the respective care delivered
• better care, through monitoring progress to allow future services to enable maternity care provided is mother and child-centric
• informing patients about the care offered at different hospitals
• more personalised and better organised care for patients through understanding what care is needed nationally, for example understanding how the antenatal care provided can affect outcomes for both mother and baby

The data held in the MSDS may also be linked to data held by NHS England from various other data sets and collections, including (but not limited to) the Community Services Data Set (CSDS) and Mental Health Services Data Set (MHSDS). The MSDS data may also be linked to external data sources such as Office for National Statistics (ONS) data and data from the National Neonatal Data Set. More information about the data sets and collections that NHS England hold and that may be used for linkage can be found on the NHS England website.

Linkage is carried out in order to investigate the relationship between care in maternity services and subsequent activity, such as health visiting and school nursing activity, as well as referrals to neonatal units, mental health services and other services.  

For more information about how NHS England uses your personal data including their lawful basis for processing, how long they hold it for and your rights, please see their website.

To manage your choice about how your confidential patient information is used beyond your own individual care, please visit the following website https://www.nhs.uk/your-nhs-data-matters/

Alternatively, you can call 0300 303 5678.

More information about the Maternity Services Dataset (MSDS) is available. 

How long we keep it

[Insert details here of how long your organisation retains Maternity Services data]

What are your rights?

You have a right to object to the processing (use) of your personal data in some circumstances by letting us know [insert contact details here].  There are legitimate reasons why we may refuse your objection, which depend on why we are processing it. This will not affect your treatment in any way.

You can also make a subject access request for information that we hold about you.

[insert details here of how patient can make a subject access request]

You also have the right to have inaccurate personal data rectified and to request the restriction or suppression of your personal data in specific circumstances, for example if you feel that the data held is inaccurate. Please contact us on [insert contact details here].

Your right to complain

If you wish to raise a complaint concerning our handling of your personal data, please visit our Feedback and Complaints pages [insert link to your organisation’s complaints pages].

You also have a right to raise a concern with the Information Commissioner's Office at any time. Their contact details are: ICO, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF.

You have a right to object to the processing (use) of your personal data in some circumstances by letting us know [insert contact details here].  There are legitimate reasons why we may refuse your objection, which depend on why we are processing it. This will not affect your treatment in any way.

You can also make a subject access request for information that we hold about you.

[insert details here of how patient can make a subject access request]

You also have the right to have inaccurate personal data rectified and to request the restriction or suppression of your personal data in specific circumstances,