Privacy Policy for registerfordiscover.org.uk

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1. ACKNOWLEDGEMENT AND ACCEPTANCE OF TERMS

Imperial College Health Partners owns and operates ‘https://registerfordiscover.co.uk’, an electronic Health Research Register, (“the register” or “website”). Imperial College Health Partners is a partnership of NHS organisations and Universities across North West London.

For the purposes of the Data Protection Act, the partners of the North West London Integrated Care Programme (“we” or “us”) are the data controllers for Discover (or the ‘Discover Research Register’). More information on the North West London Collaboration Partners, who they are and what they do can be found at the following links on their website:

The Partners: https://www.nwlondonccgs.nhs.uk/about-us/north-west-london-health-and-care-partnership

The Programme: https://www.nwlondonccgs.nhs.uk/about-us

Governance and Information Sharing: https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing

Contact Details: https://www.nwlondonccgs.nhs.uk/contact-us

This privacy policy covers all the information provided on the website and the registration pages for the register. It describes the information North West London Collaboration Partners collects when you or your computer interacts with the website, and how North West London Collaboration Partners use that information.

By visiting the website and/or by supplying any personal data, you are accepting and consenting to the practices described in this policy, including North West London Collaboration Partners use of cookies as explained below.

If you do not agree with these terms, then do not use this website or its resources.

2. INFORMATION WE COLLECT AND HOW WE USE IT

North West London Collaboration Partners collects certain information from and about its users in various ways:

Information you give us. If you decide to join the health research register on the website, you will be asked to provide us with personal information such as your name, address, date of birth, sex and contact details. Additionally, if you use the contact form and or you correspond with us by post, phone, e-mail or otherwise, personal details will be captured.

This is done to enable us to provide information and/or services to you. If for example you are registering for the health research register, the information provided enables us to accurately search your un-identifiable data held in your NHS health records and check whether you are suitable for any research projects. If you are suitable we will contact you, to let you know about the relevant study and see if you would like to find out more about taking part.

Registering for Discover will not impact any care you are receiving, and your medical record remains confidential. Researchers using Discover will not be able to identify or contact you until you have given your permission to the Discover team for this to happen. You can opt out of the register at any point, and do not have to participate in any research.

For more information on Discover, including detailed information on how it all works, health research, the people involved and downloadable resources please see the website and FAQs for further information: https://www.registerfordiscover.org.uk/about-discover/overview

Further examples of the uses made of your information. When you register to join the health research register, you will also be asked to enter your e-mail address. This is so we can send you a confirmation email and verify your registration. We also record the IP address used when you register. This to ensure that registrations are legitimately created by a human and not by a script/computer.

You may also be asked to disclose personal information to us so that we can provide assistance and information to you. Such data is used to provide online technical support and troubleshooting.

Information automatically collected when visiting the website. We may also collect information about your computer. Examples of information we may track include:

  • Your Internet protocol address.
  • The kind of browser or computer you use.
  • Number of links you click within the site.
  • City or country from which you accessed the site.
  • Date and time of your visit.
  • Name of your Internet service provider.
  • Web page you linked to our site from.
  • Pages you viewed on the site.

This is statistical data about our users' browsing actions and patterns which does not identify any individual and allows us to ensure that content from our site is presented in the most effective manner for you and for your computer.

For more details on how your information is used please visit the Discover website FAQs to find out more: https://www.registerfordiscover.org.uk/faqs

3. COOKIES

We may use cookies to personalize or enhance your user experience. In particular, we use Google Analytics cookies for the purposes of managing the performance and design of the site. A cookie is a small text file that is placed on your hard disk by a web page server. Cookies cannot be used to run programs or deliver viruses to your computer. Cookies are uniquely assigned to you and can only be read by a web server in the domain that issued the cookie to you.

One of the primary purposes of cookies is to provide a convenience feature to save you time. For example, if you personalize a web page, or navigate within a site, a cookie helps the site to recall your specific information on subsequent visits. Hence, this simplifies the process of delivering relevant content and eases site navigation by providing and saving your preferences and login information as well as providing personalized functionality.

We use the following cookies:

  • Performance Cookie (Facebook Pixel): The Facebook pixel is an analytics tool that allows us to measure the effectiveness of our advertising by understanding the actions people take on our website. This is to ensure ads are directed towards the right people and building our audience.
  • Strictly necessary cookies. These are cookies that are essential in order to enable you to move around the website and use its features, such as accessing secure areas of the website.
  • Analytical cookies. They allow us to recognise and count the number of visitors and to see how visitors move around our website when they are using it. All information these cookies collect is aggregated and therefore anonymous. This helps us to improve the way our website works, for example, by ensuring that users are finding what they are looking for easily.
  • Functionality cookies. These are used to recognise you when you return to our website and to remember choices you make and provide enhanced, more personal features.

You have the ability to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies. Please see https://allaboutdnt.com/ to adjust your settings.

To find out more about cookies, including how to see what cookies have been set and how to manage and delete them, please visit www.allaboutcookies.org.

To opt out of being tracked by Google Analytics across all websites visit https://tools.google.com/dlpage/gaoptout.

If you reject cookies by changing your browser settings, then be aware that this may disable some of the functionality on our website.

4. WHERE WE STORE YOUR PERSONAL DATA

The data that we collect from you is transferred and stored within the United Kingdom (UK). It is processed by staff operating within the UK who work for us or for one of our suppliers. This includes staff engaged in, among other things, the provision of support services. Once we have received your information, we will use strict procedures and security features to prevent unauthorised access, disclosure or loss of your data.

By submitting your personal data, you agree to this transfer, storing or processing. We will take all steps necessary to ensure that your data is treated securely and in accordance with this privacy policy.

More information on how your information is stored and who is involved, can be found in the Discover FAQs: https://www.registerfordiscover.org.uk/faqs and by contacting the Discover team: https://www.registerfordiscover.org.uk/contact

5. WHO WE SHARE YOUR DATA WITH

If you register to be contacted about Research opportunities your data will be used by our contact team to speak to you about relevant research projects. They will discuss the project with you and give you chance to decide whether you want Discover to pass your details to the researcher leading the project. You will always have the opportunity to opt out of participating (at any point) and this will have no impact on your care.

We will not share your information with any third parties for the purposes of direct marketing.

We use data processors who are third parties who provide elements of services for us. We have contracts in place with our data processors. This means that they cannot do anything with your personal information unless we have instructed them to do it. They will not share your personal information with any organisation apart from us. They will hold it securely and retain it for the period we instruct.

In some circumstances we are legally obliged to share information. This would relate to regulators, law enforcement bodies, government agencies, courts or other third parties where we think it’s necessary to comply with applicable laws or regulations, or to exercise, establish or defend our legal rights. Where possible and appropriate, we will notify you of this type of disclosure.

6. YOUR RIGHTS

Links. Our site may, from time to time, contain links to and from the websites of our partner networks, advertisers and affiliates. If you follow a link to any of these websites, please note that these websites have their own privacy policies and that we do not accept any responsibility or liability for these policies. Please check these policies before you submit any personal data to these websites.

Access rights. You have the right to access information we hold about you. Your right of access can be exercised in accordance with the Data Protection Act at any time by contacting us through our contact page: https://www.registerfordiscover.org.uk/contact

Data portability. If you have registered with Discover your data will be stored on our secure servers. You can request access to this data, and for the data to be provided to you in an accessible format (e.g. in a word processing document or spreadsheet) at any point. Please use the contact page: https://www.registerfordiscover.org.uk/contact to make this request.

Data Rectification/Erasure. You have the right to have your data rectified if you believe it is inaccurate and/or erased if you do not wish us to use your data any longer. Please use the contact page: https://www.registerfordiscover.org.uk/contact to make this request.

The Right to Object. You have the right to object to your data being processed by us and can request that it is no longer processed. This would apply for instance if you would like to ‘opt-out’ of the register. If required, please use the contact page on the main website https://www.registerfordiscover.org.uk/contact to make this request.

Data retention policy. When you register for the Health Research Register data is stored on our secure servers indefinitely. To request that an account be deleted, please contact us using the contact page on the main website https://www.registerfordiscover.org.uk/contact. With regards to IP addresses, we:

  • Retain server logs containing the IP address of all requests to that server for no more than 60 days.
  • Data may remain on back-up servers until it is overwritten, or a request is made by the data subject to erase/remove the data.

Report a Concern. You have the right to report a concern or lodge a complaint with the Information Commissioner (who oversee data protection in the UK) if you believe there are grounds to do so and have a concern about how your information is being processed. You can find out more on the Information Commissioner’s website: https://ico.org.uk/concerns/

7. CHANGES TO THIS STATEMENT

Imperial College Health Partners has the discretion to update this privacy statement at any time. We will make a good faith effort to notify the public of any changes. We encourage you to periodically review this privacy statement to stay informed about how we are helping to protect the personal information we collect. Your continued use of the service constitutes your agreement to this privacy statement and any updates.

This document was last updated 25/03/2020.

8. CONTACTING US

If you have questions, comments, and requests regarding this privacy policy, please use the contact page https://www.registerfordiscover.org.uk/contact to let us know.