The EpSMon App is the result of a collaboration between SUDEP Action, Cornwall Partnership NHS Foundation Trust and The Royal Cornwall Hospitals NHS Trust.

In this privacy policy, a reference to “personal information” means any information about you which is personally identifiable such as your name, address, mobile / device number or e-mail address and any sensitive personal information such as your physical or mental health.

This privacy policy (together with any other documents referred to in this privacy policy and any additional documents incorporated by an appstore (a website platform from which a mobile application may be downloaded)) sets out how your personal information will be stored and used. Please read this privacy policy carefully to understand our practices regarding your personal information.

Any reference to “you” or “your” means you as a user of our websites www.sudep.org/about-research/epsmon-app/ and www.epsmon.com (“Website”) and/or as a user of our mobile application software and associated services known as EpSMon which is currently hosted by iTunes. Any reference to “we”, “us” or “our” is to the collaborating parties of SUDEP Action, Cornwall Partnership NHS Foundation Trust and The Royal Cornwall Hospitals NHS Trust (together the “Collaborators”) (for full address list please see contact details below).

For the purpose of the General Data Protection Regulation 2018, the data controller is SUDEP Action, 18 Newbury Street, Wantage, Oxon, OX12 8DA.

This privacy policy only applies to the collection of your personal information by us and the use of that personal information by us and those whom we authorise. It does not cover third party websites to which we provide links. They may have their own privacy policies and/or terms and conditions of use.

By accessing and continuing to use the app, you accept the terms of this privacy policy. By clicking on the “Accept” button before downloading or streaming a copy of the App, you are also agreeing to the terms of this privacy policy. Please understand that if you refuse to accept this privacy policy, you will not be able to use the App. Please note that we may update and amend the privacy policy from time to time and any changes will be posted on the Website. If you do not agree with any part of our privacy policy then you should not use the Website or download the App.

Any personal information you submit through this app is covered by law and practice of the United Kingdom as approved by the European Commission Implementation Decision of 28.6.2021 and Regulation (EU) 2016/679 of the European Parliament and the European Council on the protection of personal data by the United Kingdom:
(i) The UK General Data Protection Regulation, as incorporated into the law of the United Kingdom under the European Union (Withdrawal) Act 2018 and as amended by the Data Protection, Privacy and Electronic Communications (Amendments etc.) (EU Exit) Regulations 2019 and 2020.
(ii) The UK Data Protection Act 2018 as amended by the Data Protection, Privacy and Electronic Communications (Amendments etc.) (EU Exit) Regulations 2019 and 2020.
(iii) The Data Protection Act 1988 (DPA): the Privacy and Electronic Communications Regulations 2003 and the General Data Protection Regulation (GDPR) from May 2018.

WHAT INFORMATION DO WE HOLD ABOUT YOU AND HOW IS IT COLLECTED?

We may collect and process the following information about you:
1. information that you provide by filling in your details on our Website and answering questions on our App. This includes information provided if you are asked to register to use parts of our Website, information provided at the time of registering to use the App, posting or writing material or requesting further services. We may also ask you for information if you report a problem with our Website or App;
2. if you contact us, we may keep a record of that correspondence;
3. we may also ask you to complete surveys (as well as questions on the App) that we use for research purposes, although you do not have to respond to them; and/or
4. details of your visits to our Website and use of the App including, but not limited to, traffic data, location data, weblogs and other communication data and the resources that you access.

We may collect information about your computer or other mobile device, including where available your internet protocol (“IP”) address or other unique device identifiers, operating system, browser type and mobile network information as well as the device’s telephone number, for system administration and to report aggregate information to the Collaborators. This is statistical data about our users’ browsing actions and patterns and does not identify any individual.

In addition, in common with many other online services, we may use “cookies” or other devices to store and sometimes track information about you (see section entitled “Cookies and other such devices” below).

HOW DO WE USE INFORMATION ABOUT YOU?

We use information about you to help us provide you with a more personalised service which is tailored to suit your needs.

Your personal information may be used by us to:
1. analyse such personal information you submit through the app and report back to you
2. monitor, develop and improve our Website and App, services and your experience
3. ensure that content on our website and app is presented in the most effective manner for you and your device
4. allow you to participate in any interactive features of our Website and App (whether now or in the future), such as voting features and selecting answers, when you choose to do so
5. contact you to discuss any issues, updates or problems with the app
6. process and deal with any complaints, feedback or enquiries made by or about you
7. and / or investigate any suspected breach of any terms and conditions otherwise relating to you and to monitor compliance including by way of checking postings or submissions to the Website and using keyword triggers to investigate usage that may be inappropriate.

Where and only where requested by you (via the App or Website) we will send you and keep you updated with information by email, telephone or mail about existing and new services and events that we are running or that our carefully selected third parties are running that we think you may be interested in. This may include services and events run by the Collaborators.

To opt-out of receiving any such communications, you can use the facility contained in any such communication or you can email us at the email address below or write to us by mail to the address below stating that you do not wish to receive further communications of this nature from us.

WILL WE SHARE YOUR INFORMATION WITH THIRD PARTIES?

We will only provide third parties with aggregate information about our users which will not include information personally identifying you.

We may pass your information to other parties as follows:

1. we may pass your personal information to our employees ad agents to administer the services provided to you by us now or in the future
2. some general statistical information about the Website and App user base, sales patterns, traffic volumes and related matters may be passed on to reputable third parties but these details will not include information personally identifying you
3. if we sell or buy any business or assets, in which case we may disclose your personal data to the prospective seller or buyer of such business or assets
4. we may disclose your personal information to the police, regulatory bodies or legal advisers in connection with any alleged criminal offence or suspected breach of any terms and conditions otherwise relating to you or otherwise where required by law and we will co-operate with any law enforcement authorities or court order requesting or directing us to disclose the identity of or locate anyone breaching any terms and conditions or otherwise for the prevention or detection of crime or the apprehension or prosecution of offenders.

We do not pass or sell your personal information to third persons for any other purpose than those set out above.

Always think carefully before disclosing your personal information or other information to other users of the Website or App. It is important that you are aware that any of your personal information or other information which you disclose to another user may then be disclosed on the Website or App by that user. We have no responsibility or control over the contents of communications made between users of the Website or App.

WHERE DO WE STORE YOUR PERSONAL DATA?
The data that we collect from you will be stored on servers in the European Economic Area (“EEA”). It may be transferred and processed by staff operating outside the EEA who work for us or for one of our suppliers. Such staff may be engaged in, among other things, the processing of your details, the processing of your communications and the provision of support services. By submitting your personal information, you agree to this transfer, storing or processing. We will take all steps reasonably necessary to ensure that your details are treated securely and in accordance with this privacy policy.

CAN YOU ACCESS THE INFORMATION WE HOLD ABOUT YOU?

The General Data Protection Regulation 2018 gives you the right to access information held about you. Your right of access can be exercised in accordance with that Act. Any access request may be subject to a fee of £10 to meet our costs in providing you with details of the information we hold about you. Subject access requests should made to SUDEP Action.

AMENDING YOUR INFORMATION

Where you register your details for certain services (such as using the App or registering your interest) and/or open a user account that you can then use to access and log on to use any services we may provide, you may change or update your details at any time via your account or by contacting us. You must make sure that you update your details as soon as possible with any and all relevant changes.

INFORMATION RIGHTS AND CHOICES

You can contact the Data Controller at epsmon@sudep.org to:

·       correct the information we hold about you

·       change your preferences relating to marketing communications from EpSMon / SUDEP Action and withdraw your consent at any time

·       make a request to access your personally identifiable information that’s held by us and maintained in our database

From 25 May 2018, depending on the circumstances, you may also have the right to:

·       request removal of personal information we hold about you

·       request restriction of processing of such information

·       object to the processing of such information

·       request a copy of such information in a portable format

Very simple requests such as correcting information on our database or changing preferences, will be dealt within the same working day if possible. In most other cases, we will deal with a request within one month. We may exceptionally need to extend this when a request is particularly complex.

COOKIES AND OTHER SUCH DEVICES

Like many other websites and application providers, our Website and App use cookies and other similar devices to collect data. A cookie is a small amount of data sent from our server and stored on your device’s hard drive. Cookies help us to provide you with a good experience when you browse our Website or use our App and also allow us to improve our Website and App.

Other uses of cookies:

We also use cookies and other such devices to compile anonymous, aggregated statistics that allow us to understand how users use the Website and / or the App and to help us improve the structure of the Website and / or the App (we cannot identify you personally in this way). We use cookies and other such devices to allow us to understand who has seen which pages and advertisements, to determine how frequently particular pages and advertisements are visited, to determine the most popular areas and generally in order to monitor usage.

Where you consent to us doing so, we may also use cookies and other such devices to:

1. allow you to carry information across pages of the Website and / or App and avoid having to re-enter information
2. within registration to allow you to access stored information
3. help us recognise you as a unique visitor when you return to the Website and / or App and to allow us to tailor content or advertisements to match your preferred interests or to avoid showing you the same adverts repeatedly
4. speed up searches
5. and / or within research surveys to ensure you are not invited to complete a questionnaire too often or after you have already done so.

Other cookies outside of our control:

We may use external services such as YouTube, Twitter or Facebook, to display certain content on our Website. We cannot prevent such websites from collecting information about your usage of their services on our Website, for example, number of plays of a video.

Managing and deleting cookies:

Most internet browsers are automatically set up to accept cookies, but you can set your browser to refuse a cookie or ask your browser to show you where a cookie has been set up. Certain services are only activated by the presence of a cookie and, if you choose to refuse cookies, particular features of this Website may not be available to you.

Find out how to disable/enable cookies by clicking on the “Managing Cookies” section of the Interactive Advertising Bureau UK website on the following link http://www.allaboutcookies.org.

Security/how do we protect your information?

We endeavour to take all reasonable steps to protect your personal information.

Unfortunately, the transmission of information via the internet is not completely secure. Although we will do our best to protect your personal data, we cannot guarantee the security of your data transmitted through the app or to our website. Any information you submit is sent at your own risk. Once we have received your information, we will use strict procedures and security features to try to prevent unauthorised access.

CHANGES TO OUR PRIVACY POLICY

Any changes we may make to this privacy policy in the future will be posted on the web-page and, where appropriate, notified to you by, e-mail or notifying you of a change when you next start the App. The new terms may be displayed on-screen and you may be required to read and accept them to continue your use of the App or other services.

This privacy policy was last updated in July 2022.

CONTACT DETAILS:

Data Controller: SUDEP Action, 18 Newbury Street, Wantage, Oxon, OX12 8DA.

Support and Enquires: SUDEP Action, 18 Newbury Street, Wantage, Oxon, OX12 8DA.

Charity Number: 1050459 (England and Wales), SCO45208 (Scotland)

Questions, comments and requests regarding this privacy policy are welcomed and should be addressed to SUDEP Action at the above address or via email at epsmon@sudep.org.

Other Collaborators:

Cornwall Partnership NHS Foundation Trust Head Office, Corporation Road, Bodmin, PL31 1LF

The Royal Cornwall Hospitals NHS Trust, Royal Cornwall Hospital, Truro, Cornwall, TR1 3LJ

---