Research and Development is a core component of Trust activity and is key to making advancements in patient care. Clinical research is an essential requirement to improve knowledge and understanding of which treatments work best. At the Royal Wolverhampton NHS Trust we continually strive to ensure that our patients are identified and offered early participation in suitable research as part of their treatment and care choice.
The research we undertake helps to answer important questions about which methods of diagnosis and treatments have the most beneficial outcomes for patients, in terms of caring, controlling or preventing disease. Patient involvement in clinical research is vital. New and better treatments for many diseases wound not have been possible without research. Research is the only way we can continue to improve prevention and treatment of diseases and patient care.
What information do we collect about you?
We collect data using existing your hospital record for example:- Paper Records
- Clinical Systems
- Images
- Information shared by other health authorities
- Name
- Addresses
- Date of birth
- Gender
- Marital status
- Telephone numbers
- Information about ethnicity
- Health and clinical course
- Results of investigations such as laboratory tests
- Smoking status
- Any learning disabilities
- Religion
-
NHS Numbers
How do we use this and what is the legal basis?
As a data controller the Trust must establish and publish the lawful basis that is relied on for processing personal data and data that is special categories (sensitive data). Generally most of the processing we carry out is to deliver your care and treatment, and is covered by the following legal provisions:- For the performance of a task carried out in the public interest or in the exercise of official authority, to delivery you a heath care service For medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems
- To support the health of the general public
- To review care provided to ensure it is of the highest standard possible
- Protect our legal position in the event of legal proceedings
The department conducts research which could involve your personal data. Should this be the case, we will rely upon 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...'
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 those personal data for one or more specified purposes.
The legal basis is informed consent.
Who do we share your information with?
We may need to share information from your health records with other non-NHS organisations from which you are also receiving care, such as Social Services or private care homes. However we will not disclose any health information to third parties without your explicit consent unless there are circumstances, such as when the health or safety of others is at risk or where current legislation permits or requires it.- NHS England
- Public Health England
- National Institute for Health Research
- Health Research Authority
- Other NHS Trusts
- General Practitioners (GP’s)
- Ambulance Services
- Primary Care Agencies
- External Health Care Companies outside of the NHS
- Neonatal Data Analysis Unit
- Imperial College and Chelsea
- Universities
- NHS Digital
There may be situations where the Trust is required by law to share information provided to us with other bodies responsible for auditing or administering public funds, in order to prevent and detect fraud.
There may also be situations where we are under a duty to share your information, due to legal requirement. This includes, but is not limited to, disclosure under a court order, sharing with the Care Quality Commission for inspection purposes, the health & safety executive if you are involved in a reportable incident whilst on site, the police for the prevention or detection of crime or where there is an overriding public interest to prevent abuse or serious harm to other and other public bodies (for example HMRC for the misuse of public funds in order to prevent and detect fraud).
For any request to transfer your data internationally outside the UK/EU, we will make sure that an adequate level of protection is satisfied before the transfer.
The Trust is required to protect your personal information, inform you of how your personal information will be used, and allow you to decide if and how your personal information can be shared.
Personal information you provide to the Trust in confidence will only be used for the purposes explained to you and to which you have consented. Unless, there are exceptional circumstances, such as when the health or safety of others is at risk, where the law requires it or there is an overriding public interest to do so. Where there is cause to do this, the Trust will always do its best to notify you of this sharing.
UK National Research Ethics Committees often allow health researchers to use clinical information anonymously (without and personal information) for medical research where this does not require any additional contact with patients. The Royal Wolverhampton NHS Trust participates in research to benefit patient care, and so your information could be studied anonymously but only after approval by a National Research Ethics Committee. If your identifiable personal information (the information that identifies you) is to be used in research you will be asked for your consent. However, a specially appointed national body, the Confidentiality Advisory Group (CAG), may allow personal details to be used without consent in specific circumstances where the research is seen to be in the public interest. Studies without a section 251 CAG approval and where informed consent is not being taken Nation Data Opt out apply.
If you do not wish personal data that we hold about you to be used in the way that is described in this notice, please discuss the matter with us. You have the right to object in certain circumstances, such as where you have given consent to the processing or have entered into a contract you have given consent, but this may affect our ability to provide you with care or advice.
Who and where do we obtain your information from?
The main method of collection would be from you directly. We would also access information from your health records relating to care that you have received using the healthcare pathways i.e., Hospital visits, admissions, GP appointments.
We would also obtain information about you that is disclosed on a telephone call relating to the research study that you are participating in.
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
If you believe your information may be inaccurate or incomplete you can make a request to have your information reviewed.
The Right to Erasure
The right to erasure is also known as the ‘right to be forgotten’ introduces a right for you to have personal data erased. Generally this right is not available with health care data. Where this right is available for specific processing you will be notified.
The right to restriction allows you to request the restriction or suppression your personal data. This right is closely linked with the right to rectify and the right to object and will only apply if:
- you contest the accuracy of your personal data and the accuracy is being verified by the trust;
- the data has been unlawfully processed (ie in breach of the lawfulness requirement of the first principle of the GDPR) and you oppose erasure and requests restriction instead;
- the personal data is no longer needed but we need to keep it in order to establish, exercise or defend a legal claim.
The right to data portability allows you to obtain and reuse your personal data across different services. The process should allow for moving, copying or transfer of personal data easily from one IT environment to another in a safe and secure way, without hindrance to usability. The right to data portability is not an absolute right and generally will not apply to your health care record unless:
- The processing is based on your consent or in the performance of a contract;
- When processing is carried out by automated meanss
The Right to Object
The right to object to processing means that data should cease to be processed. This right applies only where data is obtained with your consent. In most cases we rely on our legal basis to process your data and not consent and therefore for care purposes this right may not apply. If your data is used for any other reason this right may apply, but would have to be assessed on an individual basis.
We will always try to keep your information confidential and only share information when absolutely necessary.
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
For clinical trials records retention schedules please see the MHRC guidance available at Good Clinical Practice for Clinical Trials
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
