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
- 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.
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’
Who do we share your information with?
Information is not shared with any external agencies. No data will be shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.
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.
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 Health Records Access Team rwh-tr.healthrecordsaccess@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.
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.
National Data Opt Out: How we use your information for purposes in addition to your individual care
RWT is working in the health and care system to improve care for patients and the public.
Whenever you use a health or care service, such as attending Accident & Emergency or using Community Care services, important information about you is collected in a patient record for that service. Collecting this information helps to ensure you get the best possible care and treatment.
The information collected about you when you use these services can also be used and provided to other organisations for purposes beyond your individual care, for instance to help with:- improving the quality and standards of care provided
- research into the development of new treatments
- preventing illness and diseases
- monitoring safety
- planning services
This may only take place when there is a clear legal basis to use this information. All these uses help to provide better health and care for you, your family and future generations. Confidential patient information about your health and care is only used like this where allowed by law.
Most of the time, anonymised data is used for research and planning so that you cannot be identified in which case your confidential patient information isn’t needed.
You have a choice about whether you want your confidential patient information to be used in this way. If you are happy with this use of information you do not need to do anything. If you do choose to opt out your confidential patient information will still be used to support your individual care. This is called the National Data Opt Out.
To find out more or to register your choice to opt out, please visit www.nhs.uk/your-nhs-data-matters
On this web page you will:- See what is meant by confidential patient information
- Find examples of when confidential patient information is used for individual care and examples of when it is used for purposes beyond individual care
- Find out more about the benefits of sharing data
- Understand more about who uses the data
- Find out how your data is protected
- Be able to access the system to view, set or change your opt-out setting
- Find the contact telephone number if you want to know any more or to set/change your opt-out by phone
- See the situations where the opt-out will not apply
You can also find out more about how patient information is used at:
https://www.hra.nhs.uk/information-about-patients/ (which covers health and care research); and https://understandingpatientdata.org.uk/what-you-need-know (which covers how and why patient information is used, the safeguards and how decisions are made).
You can change your mind about your choice at any time.
Data being used or shared for purposes beyond individual care does not include your data being shared with insurance companies or used for marketing purposes and data would only be used in this way with your specific agreement.
Health and care organisations have until 2020 to put systems and processes in place so they can be compliant with the national data opt-out and apply your choice to any confidential patient information they use or share for purposes beyond your individual care.
Our organisation is currently compliant with the national data opt-out policy.
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 under GDPR rules (post 25 May 18) will be processed within 30 days. However, once our teams have established the volume of records requested there may be a requirement to extended 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, link provided below, and forward on to:
Health Records Access Team
Health Records Library
Location B19
New Cross Hospital
Wednesfield Road
Wolverhampton
WV10 0QP
Email: rwh-tr.healthrecordsaccess@nhs.net
Telephone: 01902 307999 Extension 85544/85545/88093
Subject Access Request form (PDF, 171Kb)
Subject Access Request form (Word, 54Kb)
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
How to make a complaint
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).
Data Protection Officer (DPO): Raz Edwards
Email:
rwh-tr.IG-Enquiries@nhs.net
Address: New Cross Hospital, Wolverhampton Road, Heath Town, Wolverhampton WV10 0QP
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
Wednesfield Road
Wolverhampton
WV10 0QP
Email: rwh-tr.healthrecordsaccess@nhs.net
Telephone: 01902 307999 Extension 85544/85545/88093
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
