Coeliac Privacy Policy

This Privacy Policy sets out what you can expect of us regarding how we look after your Personal Information when you volunteer to take part in the following research –

“Investigating the use of technology to improve the long-term health of people affected by coeliac disease”.

If you share information with us, we take your privacy seriously. We operate on the principle that your Personal Information belongs to you and only you can decide who you want to share it with and why. This is fundamental to the way we work and we’re committed to providing a secure environment for you to store your Personal Information and share it with others when you want to.  We seek to abide by the letter and spirit of the guidelines laid out by the UK Information Commissioner’s.

The purpose of this Cievert Privacy is to inform you of the information we collect and the purposes for which we use this information.

If you wish to discuss any matter relating to your information or request a copy of the information you have provided to us then please contact us at  support@cievert.net. We are always here to listen to your suggestions or concerns.

Who we are

We are Cievert Ltd. t/a Cievert. We are registered in England and Wales under company number 7495794 and our registered address is at Office 37 Gateshead International Business Centre, Mulgrave Terrace, Gateshead, Tyne & Wear, United Kingdom, NE8 1AN. We operate the website found at www.cievert.co.uk.

When we use words like “we” and “our”, it’s to Cievert Ltd. that we refer. If you have any concerns about the way we use your information or any questions about this Privacy Policy, please contact us via support@cievert.net or by writing to our registered office.

Information we may collect about you

1. Information you voluntarily provide.

You can visit our Sites without submitting any personal information. However, if you use certain services which requires you to create an account or subscribe to receive information, you will be required to provide personal information.

Examples of these services include (but are not limited to), subscribing to a newsletter and volunteering to take part in a research opportunity.

By registering to use these services, you expressly consent to us processing you or your child’s personal and sensitive information (or a person for whom you are their legal guardian or legally-appointed representative) in accordance with this Cievert Privacy Policy.  This is the legal basis upon which we collect and process your/your child’s Personal Information which is in accordance with Article 6(1)a and 9(2)a of the General Data Protection Regulation (GDPR). Where we are relying on consent to process your personal data, you may withdraw such consent at any time by letting us know at support@cievert.co.uk.  Please note that if you withdraw your consent this will not affect the lawfulness of any processing of your/your child’s information carried out by us before the withdrawal of your consent.

Your information is collected and processed by us in accordance with this Privacy Policy if you choose to register with one of our services, or complete an online form or survey via our Site, send an email to us or speak to one of our team on the phone. By providing us with your information in this way, you are expressly consenting to us using your information in the manner set out in this Policy.

Registering to a Cievert service

When you register, subscribe or submit interest in a Cievert service via one of our websites or over the phone, we ask for Personal Information which specifically identifies you, such as your name and contact details. We keep your Personal Information private and do not share it without your prior express consent. When you are prompted to provide this express consent, we will clearly and unambiguously explain to you what Personal Information we will be sharing, with whom and for what purpose. For example, we may contact you to invite you/your child to participate in a clinical trial.

Personal Information that we will only share with your express consent includes:

• your name;
• your email address;
• your telephone number (if required).

The personal information we collect may also include:

• your medical information or the medical information you provide on behalf of a child of whom you are a legal guardian;
• your demographic information;
• your age or the age of a child of whom you are a legal guardian.

Anonymised and Aggregated Information that we call Shared Information

The purpose of Cievert is to create a future in which routine healthcare is made a thing of the past.  We want all care to be personalised – For patients to be seen when they clinically need to be seen and not when a diary dictates.

We can only achieve our purpose if we share information with our strategic partners including, but not limited to: academic research institutions and medical researchers.

Please rest assured that the information we share with our strategic partners is anonymised and aggregated. This Shared Information does not identify you/your child in any way.  If we wish to deviate from this we will seek your consent before we do so.

This is how it works: When you subscribe to a Cievert service, take part in online surveys or complete other forms on our Site, we extract certain information which we anonymise such as your/your child’s age, country of residence and symptom or treatment information and we aggregate this anonymised information with anonymised information of other members (together we call this “Shared Information”). Shared Information is shared with our strategic partners to further research and ultimately the knowledge of diseases.

Shared Information includes:

• Demographic information such as country of residence, city, age, gender.
• Any photographs of a symptom or condition which does not identify you/your child as a person (for example a picture showing the extent of a rash on a foot where the photograph only depicts the foot).
• Information on a medical condition, e.g.: medical history, treatments, symptoms, diagnosis, clinical test results, genetic information, provided that this information has been pseudonymised and we have replaced information that directly or indirectly identified you as an individual with one or more artificial identifiers or pseudonyms.

Any Personal Information relating to you/your child, that you submit in a survey, virtual focus group, online forum or interview, will be kept private and will only be shared with our strategic partners if you provide us with your express prior consent. At the time of providing us with your express prior consent, we will provide you with clear and unambiguous information about what you are consenting to. You can always withdraw your consent to your Personal Information being shared in this way.

What we do with your information

Information submitted to Cievert will be processed to:

• Provide you with updates on the service and any content that may be of interest to you.
• Deliver our services and run our business generally.

We compile statistics about user trends on our platform, which are used by third party organisations to better understand how users interact with businesses online. These statistics are drawn from a dataset that does not contain any information from which you can be identified.

How long we intend to keep your information

We will keep your Personal Information until you instruct us to delete your details. If you wish for us to delete your Personal Information, you can instruct us by emailing support@cievert.net.

Where we hold your information

If we hold information about you that would be defined by the General Data Protection Regulation 2018 as “personal data” (which is to say, information that would identify you, such as your name and email address or place of work), you can find out what personal data we hold about you or ask us to update or delete that personal data by sending us an email at support@cievert.net. It may be necessary for us to carry out checks to establish that you really are who you claim to be before providing any such information to you.

All data we hold on you will remain within the EU at all times.

What we do to ensure the security of your personal information

We take the security of your data very seriously. Our approach to information security is constantly evolving and continually reviewed.

We have adopted industry best practices from both technological and business process perspectives in order to make securing your data a key part of the way we do business.

Your rights regarding your personal information

We will contact you with updates about our products and services and how we are evolving to deliver greater benefits to you.

You can opt out of communications at any time you choose by following the ‘unsubscribe’ information in the correspondence, and we will provide a list of contact options on our website.

Information that we hold about you is available to you at all times by contacting us at support@cievert.net. It may be necessary for us to carry out checks to establish that you really are who you claim to be before providing any such information to you.

We will provide a copy of the information free of charge. However, we reserve the right to charge an administration fee when a request is: manifestly unfounded or excessive, particularly if it is repetitive; or for further copies of the same information (that has previously been provided).

Our Cookie Policy

As part of our overall approach to privacy and transparency, this section describes what cookies are in the context of our web interface, and what their use means to you. At the end, we’ve included some links to help you research cookies and their impact, and how you can use your web browser to control the way it manages cookies.

What are cookies?

According to Microsoft:

“Cookies are a very small text file placed on your hard drive by a web page server. It is essentially your identification card, and cannot be executed as code or deliver viruses. It is uniquely yours and can only be read by the server that gave it to you. A Cookie’s purpose is to tell the server that you returned to that web page.”

What cookies do we use?

In this section, we explain how cookies are used in the overall service we provide to our clients, and how you can switch off cookies via a setting in your browser.

Our use of cookies:

• We use cookies to record when you’ve accessed our service via our website; we also use our own cookies to recognise who you are when you return to our platform in a new visit.
• These cookies are an essential part of how our platform operates, and they greatly improve your client experience. Ironically, the banner that you saw the first time you looked at the website alerting you to the use of cookies makes use of a cookie itself. That would not be required were it not for the European Directive on the use of cookies.
• These cookies are only used by us, and the information they contain is not shared with anyone else.

List of services we use which use their own cookies:

• We use Google Analytics to understand general trends about our content and traffic sources: for example, where users come from, which pages are most popular, which sites provide most traffic and how our marketing efforts impact the number of visits we receive. Google’s statement about privacy is here: https://www.google.co.uk/intl/en/analytics/privacyoverview.html

Consent

In line with the latest advice from the Information Commissioner’s Office, we interpret your continued use of our website as consent for us to use cookies to capture data about how you interact with our services, and those of other services we use.

More information about cookies

Link which provides more information about cookies:
https://www.allaboutcookies.org/

Link explaining how to switch off cookies in various browsers:
https://www.allaboutcookies.org/manage-cookies/

Contact us if you would like to complain or wish to know more about how your information will be used

We can be contacted via support@cievert.net or by writing to our registered office.

Contact the Information Commissioner if there is a problem

If you consider us not to have addressed your problem, you can contact the UK Information Commissioner’s Office for assistance. Further information can be found via https://www.ico.gov.uk/complaints/data_protection.aspx.