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Opti-Prem Privacy Notice

Data Controller: Opti-Prem Privacy Notice

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The Opti-Prem project, hosted by sponsor Trust 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).

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.

Workstream 4 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

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For workstreams 1,2 & 3 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 workstream 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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Information is not shared with any external agencies.


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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 (Workstream 4).


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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.

access

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.

rectification

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.


erase

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).

restrict processing

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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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 under GDPR rules will be processed within 30 days. However, once our teams have established the volume of records requested there may be a requirement to extend this up to a further 2 months. 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:

Data Protection Team 
Health Records Library 
Location B19 
New Cross Hospital 
Wednesfield Road 
Wolverhampton 
WV10 0QP

Email: rwh-tr.dataprotectionteam@nhs.net 
Telephone: 01902 307999 Extension 5544

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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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If you have any questions about your care or a complaint, please speak to the health professional with your care in the first instance. If this is not resolved to your satisfaction you can contact the Patient Advice and Liaison Service (PALS). 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:

Data Protection Team
Health Records Library
Location B19
New Cross Hospital
Wednesfield Road
Wolverhampton
WV10 0QP

Email: rwh-tr.dataprotectionteam@nhs.net 
Telephone: 01902 307999 Extension 5544.

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/


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A Teaching Trust of the University of Birmingham