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Privacy Policy

The Cleft Registry and Audit NEtwork (CRANE) is committed to protecting your privacy and always using your data responsibly.

We know that you are putting your trust in us by providing either your or your child’s personal data, and we want you to feel confident that we respect your privacy and rights.

This privacy policy (and any other documents referenced in it) explains how we use any personal data that we collect from you, or any personal data on your child that is provided to us.

By using our website, database (www.crane-database.co.uk) or providing any personal data as explained below, you are accepting and consenting to the practices described in this policy.

If at any time you would like to change your information or how we communicate with you (or if you would like to stop receiving communications from us altogether), get in touch at [email protected] or call us on 020 7869 6610. We will not try to change your mind or ask for any more information other than what we need to process your request.

We want this policy to be transparent and comprehensive. If you have any questions or concerns after reading this policy, please share them with us so we can make sure they’re addressed.

 

Data we may collect from you

In Short

We will collect and store the information you explicitly consent to. We do our best to make sure it’s clear what will happen when you provide consent through the information we provide in our leaflets and on our web pages. We then process your information in public interest in the area of public health.

When you use our website or read our e-mails, we’ll also collect information that your browser shares with us, like where you are in the world or what links you click on, but we don’t use this to identify you personally unless it’s necessary to provide you with a service you’ve asked for.

In Detail

If you are a patient or parent/carer – CRANE may collect and process the following kinds of data about you:

  • Information on you or your child when you provide consent through the information we provide in our leaflets.
  • Our website may collect information available from your browser, such as the country you’re in and the language you’re using, as well as resources you access. This is statistical data about our visitors’ browsing habits and does not identify you personally, though we do use it to better understand how people use our website. We have a legitimate interest in collecting browser and other information to be able to provide the services expected by our users.
  • If you contact us, we may keep a record of that correspondence. If you send us personal information via email, we may keep your email address and the contents of your message for our records.

If you are a member of a cleft team – CRANE may collect and process the following kinds of data about you:

  • Information you provide when requesting an account to add patient information to CRANE or when submitting any of the forms on our website, such as our consultation surveys. This information may include personal contact details, and other information you provide when submitting one of these forms.
  • Our website may collect information available from your browser, such as the country you’re in and the language you’re using, as well as resources you access. This is statistical data about our visitors’ browsing habits and does not identify you personally, though we do use it to better understand how people use our website.
  • Our emailing software (for e-newsletters) may collect information available from your browser or email client, such as when and where you opened any of our emails and which links you clicked on. Like almost all organisations, we use this to analyse how successful our emails are. We won’t access the tracking data for your particular email address unless it’s to provide you with a service you’ve asked for or process a request you’ve made. To avoid sending tracking data, you can set up your email client to not download/display external images automatically, and access any links by right-clicking on them, selecting ‘copy link location’, and pasting the link in a different browser window or tab.
  • If you contact us, we may keep a record of that correspondence. If you send us personal information via email, we may keep your email address and the contents of your message for our records.
  • We may ask you to complete surveys for consultation purposes and/or to help us improve our website and database. Unless clearly stated, we will not collect personally identifiable information in these surveys and will not connect you personally to your responses.
  • Other information about yourself which you provide to us for specific purposes.

 

How we use your data

In Short

We’ll use your information in the way you have asked us to, e.g. to send you emails or other communications, or to provide you with a service you have signed up for, etc. You can ask for us to change your details or preferences (or to remove you altogether) at any time (see ‘Your Rights’ below).

We’ll also use your information as part of our database to stay in touch about CRANE and make sure cleft care professionals can use our reports to provide the best evidence-based care they can for everyone.

In Detail

Your data will only be used for the purposes indicated when you submit the data or as laid out in this privacy policy.

If you are a patient or parent/carer – we use personal information held about you in the following ways:

  • To update and enhance our records. Please note that while we work to ensure the data we hold on you is accurate and up to date, CRANE cannot be held responsible for confirming the ongoing accuracy of your personal information. You can contact us at any time to change or update your information.
  • To make sure the content on our website is presented in the best way for you and your browser or device.
  • We analyse your data as part of a large set to help professionals provide the best evidence-based cleft care through the information we make available in our reports and publications.

If you are a member of a cleft team – we use personal information held about you in the following ways:

  • To update and enhance our records. Please note that while we work to ensure the data we hold on you is accurate and up to date, CRANE cannot be held responsible for confirming the ongoing accuracy of your personal information. You can contact us at any time to change or update your information.
  • To provide you with the most relevant information and announcements, on both a local and national level. This may include research studies which we think may be particularly relevant to you.
  • To send you the kinds of communications you’ve asked to be sent when signing up, e.g. CRANE News, e-newsletters, etc. You can opt in/out of any kinds of content we send you by following the instructions on the relevant content, or by contacting us directly with your preferences (see ‘Your Rights’ below).
  • To make sure the content on our website and in our emails is presented in the best way for you and your browser or device.
  • To review our services and the content we provide to make sure it’s right for our users.
  • We may analyse your data as part of a large set to compile information on your, so we can make sure our services are appropriate and accessible to all. For example, making sure we have information leaflets in languages appropriate to the patients you serve. e.g. In Welsh, Polish and Urdu.

 

Sharing your data

In Short

We won’t give, trade or sell your information to anyone else so they can contact you directly without your explicit consent. As described in our information leaflet, we only share a small amount of patient information with health and education data providers, and we make sure they take good care of this data while they have it. This information is shared to make sure our records are correct and to improve the quality of CRANE data that is used for research purposes, in public interest in the area of public health, under GDPR art. 9, 2(i).

Parents and carers are asked for their full and informed consent at all stages and can withdraw their child from the database at any time. No identifiable information is included in reports or on our web pages.

In rare and extreme circumstances, we may have a legal obligation to share information with the police or other parties.

In Detail

If you are a patient or parent/carer:

Only a small number of CRANE project team staff have access to our secure database which holds the personal information we may collect. Other personal information, e.g. sent in emails to staff, may be summarised and stored on our database if staff feel it is necessary to gather a complete record of your history with us.

As described in our information leaflet, we share a small amount of patient information from CRANE with health and education data providers for the purpose of linkage. This helps give us more information about how cleft patients are affected, for instance in school, and how much they access healthcare services.

The health and education data providers that we link to, and the datasets they share with us are listed below:

This linkage, detailed in the CRANE Data Flow Diagram, allows us to share findings with the public on similarities and differences in school results according to children’s type of cleft, the presence of other medical problems, and other factors about their care. We do not use any information in our reports that could be used to identify individual children, their families, or their schools.

If you are a member of a cleft team:

Only a small number of CRANE project team staff have access to our secure contacts database which holds the personal information we may collect. Other personal information, e.g. sent in emails to staff, may be summarised and stored on our database if staff feel it is necessary to gather a complete record of your history with us.

Third Parties

  • We will never pass on your information to a third party so they can contact you directly without your explicit consent. Your information will also never be sold to or ‘swapped’ with a third party, including other charities or the NHS.
  • We may pass on your data to carefully screened third parties for processing to help us clean up our database (e.g. by removing records of the deceased children), or for the purposes of mass-mailing (e.g. sending CRANE News). These organisations do not keep your data longer than is absolutely necessary.
  • We may disclose your personal information to third parties without your explicit consent if we have a legal obligation to do so, or in order to enforce or apply any other agreements you’ve entered into with us. These occasions are extremely rare.

 

Storing your data

In Short

We store your data in a few different places for different purposes, but all of these places are secured and comply with all UK and EU data laws.

In Detail

We store your data in two key places as detailed in our CRANE Data Flow Diagram:

  • CRANE Database: This holds most of the personal data information we collect. The CRANE Database is hosted by Crown Informatics Limited, with a System Level Security Policy (SLSP) in place. This SLSP is a framework to ensure that information gathered and held for the CRANE Database is managed securely and effectively by the Royal College of Surgeons of England to protect patient confidentiality.
  • CRANE’s secure servers at the at the Royal College of Surgeons (RCS) of England: This is where CRANE’s files are stored, and this may include temporary copies of mailing lists, copies of letters we’ve sent you, etc. This is also where any information you send us via email is stored until deletion.

Everywhere we store your data complies with strict UK and EU regulations on data security and protocols. This includes data centres based in the USA which work to ensure they are fully compliant for organisations, like CRANE, based in Europe.

By submitting your personal data to us, you agree to us transferring, storing or processing your data in this way. We take all reasonable steps to ensure your data is treated securely and in accordance with your right to privacy.

 

Your Rights

At any time you can email [email protected] or call 020 7869 6610 to ask for:

  • CRANE to change or remove some or all of the information we store on you
  • CRANE to change the way we contact you, and/or the type of content you receive
  • A full record of all the information we hold on you as per your rights to a Subject Access Request under GDPR.

We’ll happily comply with any requests like these, and we’ll make it as easy as we can for you.

Please note that other websites we may link to should have their own privacy and data protection policies, and CRANE does not accept any responsibility or liability for these policies. Please check these carefully before submitting any personal data to these websites.

If you are dissatisfied with how we manage your data and we cannot address your query up to your satisfaction, you have a right to raise a complaint with the Information Commissioner’s Office (ICO). You can do so by following the link https://ico.org.uk/make-a-complaint/.

Find out more about your rights as an individual to data protection, as specified by the Information Commissioner’s Office (ICO).

 

Cookies

This website uses cookies to distinguish you from other users. This helps us to give you a better experience when browsing our website, and helps us to improve it for other users. We don’t use this information to identify you personally.

See our cookie policy for more information.

 

This Policy

Any changes we make to this privacy policy will be posted on this page. We may make minor updates without providing notice. If a major change is planned which we think any of our users may be concerned about, we will announce these 30 days before they come into effect via Newsletter, and they will be highlighted at the top of this page.

By continuing to use our website you will be deemed to have accepted these changes.

 

Contact

Questions and comments regarding this policy or any of CRANE’s data handling practices should be addressed to [email protected] where they will be passed on to the Data Protection Officer. At the time of writing, this is Katarzyna Wieckowska, Information Governance Manager, at the Royal College of Surgeons (RCS) of England.

 

Last reviewed: May 2022

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