Privacy Policy & Cookie Usage

 

Privacy Statement (Data collected for the Trial)

The laws about how personal data can be used have recently changed so we need to explain what this means for the data you are contributing.

The Walton Centre NHS Foundation Trust is the sponsor for this study based in the United Kingdom; they have delegated the day-to-day management of the study to the Clinical Trials Research Centre (CTRC), which is part of the University of Liverpool and to the Centre for Health Economics and Medicine Evaluation, Bangor University. The Walton Centre NHS Foundation Trust, the Clinical Trials Research Centre (CTRC), which is part of the University of Liverpool and the Centre for Health Economics and Medicine Evaluation, Bangor University will be using information from you and your medical records in order to undertake this study and will act as the data controllers for this study. This means that we are responsible for looking after your information and using it properly. The Walton Centre NHS Foundation Trust, the University of Liverpool and Bangor University will keep identifiable information about you for a maximum period of 15 years after the study has finished.

Your NHS Hospital will collect information from you and your medical records for this research study in accordance with our instructions.

Your NHS Hospital will use your name, NHS number and contact details to make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. Individuals from the Walton Centre NHS Foundation Trust, the University of Liverpool and regulatory organisations may look at your medical and research records to check the accuracy of the research study. Your NHS hospital will pass these details to the University of Liverpool along with the information collected from you and your medical records. The only people in the University of Liverpool who will have access to information that identifies you will be people who need to audit the data collection process. The people who analyse the information will not be able to identify you and will not be able to find out your name, NHS number or contact details.

Your NHS hospital will keep identifiable information about you from this study for 15 years after the study has finished.

 

How we use your information

The Walton Centre NHS Foundation Trust, the University of Liverpool and Bangor University take great care to abide by our legal and moral obligations when handling your personal and healthcare data. Due to changes introduced in the EU General Data Protection Regulation (GDPR), we would like to provide you with information on the lawful basis on which we are processing your data. The lawful basis for the processing of your personal data for the research study which you have participated in is for the performance of a task carried out in the public interest in line with Article 6 (1) (e) GDPR.

As a NHS organisation / University, the Walton Centre NHS Foundation Trust, the University of Liverpool and Bangor University use your information to conduct research to improve health, care and services. As publicly-funded organisations, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. To safeguard your rights, we will use the minimum personally-identifiable information possible. You can choose to withdraw your consent for the information previously collected about you up to the point that analysis of the data collected for the NERVES study starts. If you choose to withdraw from the study before analysis of the data starts, we will not use the information collected about you in the study analysis. Further details about withdrawal from the study can be found on the Patients/Families page of the NERVES website: http://www.nervestrial.org.uk/patients.html

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

More information about GDPR and what it means can be found here:

ICO website: https://ico.org.uk/for-organisations/guide-to-the-general-data-protection-regulation-gdpr/

HRA website: https://www.hra.nhs.uk/hra-guidance-general-data-protection-regulation/

The University of Liverpool will also collect information about you for this research study from your NHS hospital visits. This information will include your NHS number, Date of Birth, Postcode and health information, which is regarded as a special category of information. (Special category data is personal data which the GDPR says is more sensitive, and so needs more protection.) We will process your special category data in line with Article 9 (2) (j) GDPR. The University of Liverpool will send your NHS number, date of birth, postcode and Trial ID to NHS Digital. NHS Digital will obtain your routine NHS records for the financial years that cover the duration of the study from NHS Digital’s Health Episode Statistics (HES) database. This includes details of any hospital admission(s) you have had for the duration of the study period. NHS Digital will remove the NHS number, date of birth and postcode but keep it linked to your trial ID and then send your routine records to Bangor University who will use them to undertake a Health economic analysis.

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter.

The Data Protection Officers for the Walton Centre NHS Foundation Trust, the University of Liverpool and Bangor University are Lorraine Blyth (the Walton Centre), Dan Howarth (the University of Liverpool), Gwenan Hine (Bangor University) and you can contact them at:

Lorraine Blyth: dpo@thewaltoncentre.nhs.uk

Dan Howarth: LegalServices@liverpool.ac.uk

Gwenan Hine: gwenan.hine@bangor.ac.uk

If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO). To register a complaint with the ICO you can contact them via:

Telephone: 0303 123 1113

An online complaints form on the ICO website: https://ico.org.uk/make-a-complaint/complaints-and-compliments-about-us/complain-about-us/

The Walton Centre NHS Foundation Trust privacy notice can be found here: https://www.thewaltoncentre.nhs.uk/318/your-information-your-rights-.html

The Bangor University privacy notice can be found here: https://cheme.bangor.ac.uk/data-protection.php.en


Privacy Statement (Use of the Trial Website)

CTRC is sensitive to privacy issues on the Internet. We believe that it is important you know how we treat the information about you that we receive on the Internet.

Information Collected

In general, you may visit the Site without telling us who you are or revealing any personally identifiable information about you. Our servers collect the domain names, operating system in use (e.g. Apple, Windows, Linux) and browser (e.g., Firefox, Internet Explorer). This information is aggregated to measure the number of visits, average time spent on the Site, pages viewed, etc. CTRC uses this information to measure the use of our Site and to improve the content of our Site. E-mail addresses and other personally identifiable information such as first and last name, telephone number, and other similar information are known only when voluntarily provided.

Use Of Your Information

We may use the personal information you provide for any of the following purposes: (1) to understand the use of our Site and make improvements; (2) to respond to specific requests from visitors; (3) to protect the security or integrity of our Site when necessary. At times, we may conduct online surveys to better understand the needs and profiles of our visitors. When we conduct a survey, we will try to let you know how we will use the information at the time we collect the information from you on the Internet. Disclosures Of Your Information Unless otherwise disclosed during the collection, personally identifiable information that may be collected in connection with visitors to this Site is retained by CTRC. We never sell, transfer or otherwise disclose this personally identifiable information outside this organisation, except where disclosure is required by law.

Other Websites

This Site may contain links to other sites of third parties. We are not responsible for the content or privacy practices of those other sites. We may revise this Privacy Statement from time to time. You are responsible for checking this policy when you visit our Site to review the current policy. If you do not agree with the policy, you should cease use of the Site immediately.

Cookies

Some of our web pages utilise "cookies". A "cookie" is a small text file that may be used, for example, to collect information about web site activity. Some cookies and other technologies may serve to recall Personal Information previously indicated by a web user. Most browsers allow you to control cookies, including whether or not to accept them and how to remove them.

Some cookies are necessary for the operation of our website, if you choose to block them some aspects of the site may not work for you. We use cookies to monitor site traffic via our statistics package Google Analytics.

 
 




I'm fine with this [X]

The site uses cookies, some may have been set already. Please refer to our privacy policy & cookie usage statement.
If you continue to use the site we'll assume you're happy to accept the cookies.