Data Controller: Opti-Prem Privacy Notice

The Opti-Prem project, hosted by sponsor Trust Royal Wolverhampton NHS Trust (RWT).

The Opti-prem Project, hosted by sponsor The Royal Wolverhampton NHS Trust (RWT). This is a NIHR sponsored study which aims to define where it is best for babies born between 27 and 31 weeks of gestation in England, to be born and cared for. At present, their care is scattered between different types of neonatal units (LNU and NICU).

What information do we collect about you?

The Opti-Prem project is split into 4 distinct workstreams. For the first 3 workstreams, the Trust will use identifiable data already available on the National Neonatal Research Database (NNRD) and will involve the team analysing data that is anonymised.

The final workstream involves consenting you directly to be a part of the study. If you agree to be part of the study we will collect, store and use the following categories of information about you and your family;

Personal contact details such as name, addresses, and telephone numbers for only parents who are part of the interview section of the study, in which we ask for parent views on where it is best for babies to be born and cared for, from their perspective. We will use their responses to help us define recommendations for the country. Parents will give us consent to interview them, and we have ethical approval for this from the national ethics body.
Date of birth
Gender

We may also collect, store and use the following” special categories” of more sensitive personal information:

Information about ethnicity
Information about health and clinical course for baby, including any medical condition, health and sickness.
This information is useful to help us show that we have a good mix babies in the study, and the date of birth is to help us be sure we only look at for all babies who are born and discharged during the period of the study

The data is stored on an encrypted computer and hard records are stored safely in a lockable cabinet on University of Leicester premises. The ethical approvals for all of these are logged on IRAS 212034 application; the project has been reviewed and signed off by the RWT Caldicott Guardian for RWT.

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How do we use this and what is the legal basis?

For work streams 1 &2 the legal basis which allows us to process your personal data is GDPR Article 6 (1)(f)…’legitimate interests…except where such interests are overridden by the interests or fundamental rights and freedoms of the data subject…’

For work stream 3, the legal basis which allows us to process your personal data is GDPR Article 9 (2) (j),..’processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject…’ and GDPR Article 6 (1) (e)… ‘processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.

For work stream 4, the legal basis which allows us to process your personal data is Article 6 1(a)’ the data subject has given consent to the processing of his or her personal data for one or more specific purposes’; and Article 9 (2) (a) ‘the data subject has given explicit consent to the processing of those personal data for one or more specified purposes’

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Who and where do we obtain your information from?

For Work stream 3 we will be receiving data from NHS Digital.

For Work stream 4 we identify parents to interview in the study from baby records on the unit, and the interviews are conducted through a named social scientist who has been employed to be part of the study. Information is obtained directly from you if you opt to be part of the project.

We are not using automated decision-making, including profiling (using computer algorithms to make decisions on individuals without human intervention) for this project.

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What rights do I have in relation to my information?

Below is a list of the rights you have in relation to your data and when they apply. To make an application for any of the below rights please contact the Data Protection team rwh-tr.dataprotectionteam@nhs.net in the first instance. All rights should be considered within 30 calendar days from date of receipt, but may be extended if complex.

The Right of Access
You have the right to request a copy of any information held by the Trust as well as any supplementary information. See How do I request my information? for details on how to request your information.

Right to Rectification
Request correction of the personal information that we hold about the subject. This enables the subject to have any incomplete or inaccurate information we hold about corrected.

The Right to Erasure
Request erasure of the subject’s personal information. This enables them to ask us to delete or remove personal information where there is no good reason for us continuing to process it. They also have the right to ask us to delete or remove personal information where the subject has exercised the right to object to processing (see below).

The Right to Object
Object to processing of personal information where we are relying on a legitimate interest and there is something about a particular situation which makes the subject want to object to processing on this ground.

The Right to Restrict Processing
Request the restriction of processing of personal information. This enables the subject to ask us to suspend the processing of personal information about the subject, for example to establish its accuracy or the reason for processing it.

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How long is my information kept for?

All our records are destroyed in accordance with the NHS Retention Schedule, which sets out the appropriate length of time each type of NHS records is retained. We do not keep your records for longer than necessary.

All records are destroyed confidentially once their retention period has been met, and the Trust has made the decision that the records are no longer required. For more information please see the Record Management Code for Practice for Health and Social Care 2016, retention schedules.

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How do I request my information?

You have a right to see or have copies of any information held by the Trust that relates to you free of charge. We have the right to charge an administration fee in situations where repeated requests are received for the same information or the request is excessive. You will be required to prove your identity when making requests.

Subject Access Requests must be processed within 30 days of receipt of your request. However, once our team has established the complexity of the request there may be a requirement to extend this up to 90 days. We will contact you within 30 days should this be the case.

To request access to health records please complete a Subject Access Request form and forward on to:

Health Records Access Team
Health Records Library (Location B19)
New Cross Hospital
Wolverhampton Road
Wolverhampton
WV10 0QP

Email: rwh-tr.healthrecordsaccess@nhs.net
Telephone: 01902 307999 Extension 5544 / 5545 or 8093

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How to make a complaint

If you have any concerns or wish to make a complaint about your care, please speak to a health professional involved in your care in the in the first instance. If your concern is not resolved to your satisfaction please contact the Patient Advice and Liaison Service (PALS).

Data Protection Officer (DPO): Raz Edwards
New Cross Hospital, Wolverhampton Road, Heath Town, Wolverhampton WV10 0QP
Email rwh-tr.IG-Enquiries@nhs.net or Telephone: 01902 307999 ext. 8124

The Data Protection Officer is a point of contact for advice and guidance in relation to your rights. The DPO is responsible for monitoring the Trusts compliance with the Data Protection Act 2018 and the General Data Protection Regulations (GDPR) 2016 as any policies the Trust has in relation to the protection of personal data. The DPO shall perform their duties in an independent manner with due regard to the risk associated with processing operations, taking into account the nature, scope, context and purposes of processing.

If you have any concerns about how your information is being processed or any of the rights as detailed above, please contact the Trust in the first instance through:

Health Records Access Team
Health Records Library (Location B19)
New Cross Hospital
Wolverhampton Road
Wolverhampton
WV10 0QP

Email: rwh-tr.healthrecordsaccess@nhs.net
Telephone: 01902 307999 Extension 5544 / 5545 or 8093

You also have a right to complain directly to the Information Commissioner’s Office if you feel the Trust has not responded effectively to any of the above.

Information Commissioners Office
Wycliffe House
Water Lane
Wilmslow
SK9 5AF

Telephone: 0303 123 1113
Website: https://ico.org.uk/