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Privacy Policy

Who are we?

The Cleft Registry and Audit Network (CRANE) is managed by the Royal College of Surgeons of England, the data controller of your personal data. CRANE is dedicated to safeguarding your privacy and ensuring your data is used responsibly.

We understand the trust you place in us when sharing you or your child’s personal data. Our goal is to ensure you feel confident that your privacy and rights are respected.

This privacy policy, along with other documents referenced, outlines how we collect, use, and protect personal data about your child.

By using our website, the database (www.crane-database.co.uk) or sharing personal information as described, you agree and consent to the practices outlined in this policy.

 

Purpose of Data Collection and Legal Basis

We collect your information for the following purposes:

  • We collect and store the information you explicitly consent to share with us for the purposes of CRANE management. We strive to ensure that you are adequately informed about the process when you provide consent through the information we provide in our leafletsand on our web pages. Your data is then further processed in the public interest to support public health initiatives.
  • When you contact us over e-mail, phone or when you write to us outside of our data collection process, we will process your communications to address your query. We do this under legitimate interest.
  • We have cookies present on our website. We use strictly necessary cookies under our legitimate interest and Google Analytics when you give us consent to do so. We use Google Analytics to improve the monitoring of our website and collect feedback to improve our services. We retain Google Analytics data for up to 14 months and this data is collected only in anonymised format. You can control how Google Analytics works on your web browser through your web browser’s settings page.

 

We might collect your IP address, type of web browser and your browsing activity as part of our access logs collection. This is done in our legitimate interest, and we only use this data to conduct investigation when we find non-conformities or investigate GDPR related incidents.

  • When you have a CRANE account or complete our surveys, we will process data required for account set-up under contractual obligation if we have a contract in place, or our legitimate interest, as required.
  • If you have a CRANE account with us, we might add your email to our email software for e-newsletters and may collect information such as when and where you opened our emails, and which links you clicked. We do this in our legitimate interest to ensure you are informed about current CRANE updates. Like almost all organisations, this data is used to analyse how effective our email communications are. We do not access tracking data linked to your email address unless it is necessary to provide a service or process a request. To disable 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 are a patient or parent/carer, CRANE may also collect and process the following types of information about you:

  • Data about you or your child when you provide consent as outlined in our leaflets.
  • If you contact us, we may keep a record of your correspondence. For example, if you send us personal information via email, we may be required to keep your email address and the contents of your message for our records.

WARNING: Please do not send us patient identifiable data via email.

If you are a member of a cleft team, CRANE may also collect and process the following types of data about you:

  • If you contact us, we may keep a record of that correspondence, including your email address and message content, for reference purposes.
  • We may invite you to complete surveys for consultation purposes and/or to help improve our website and database. Unless clearly stated, these surveys do not collect personally identifiable or link responses to individuals.
  • Any additional information you provide to us for specific purposes may also be collected and processed.

 

How we use your data

We will use your information to fulfil the purposes described in Purpose of Data Collection and Legal Basis section, such as sending you emails, providing services you have signed up for or sharing updates. You can update your details, change your preferences, or ask to be removed from our records at any time (see ‘Your Rights’ below).

We will also use your data as part of our database to stay in touch about CRANE initiatives and to ensure cleft care professionals can access evidence-based reports that support the best care for patients.

Your data will only be used for the purposes indicated at the time of submission or as outlined in this privacy policy.

 

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

  • To update our records. While we aim to keep your information accurate and up to date, CRANE is not responsible for confirming the ongoing accuracy of your personal information. Contact us at any time to update your details.
  • We analyse your data as part of a larger dataset to help cleft care professionals provide evidence-based care through 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 our records. Like patient data, we aim to keep your information accurate and encourage you to notify us of any changes. CRANE is not responsible for confirming the ongoing accuracy of your personal details.
  • To provide you with the most relevant information and announcements we provide updates on both local and national announcements. This may include research studies which we think may be relevant to your work.
  • To send you the updates you have signed up for such as CRANE News or e-newsletters. You can opt in/out of these communications by following the instructions provided, or by contacting us directly (see ‘Your Rights’ below).
  • To ensure the content on our website and emails is presented in the best way for you and your browser or device.
  • To assess and improve the services and content we provide, ensuring they meet user’s needs.
  • We analyse large datasets to refine and expand our services, such as providing information leaflets in languages that meet the needs of patients you serve e.g., in Welsh, Polish and Urdu.

 

Sharing your data

As outlined in our information leaflet, we share limited patient information with health and education data providers. Data is always handled and shared securely. This data sharing supports accurate record-keeping and enhances the quality of CRANE data used for research, in public interest, under GDPR art. 9, 2(i).

Parents and carers are asked to provide full and informed consent at every stage and can withdraw their child’s information from the database at any time. No identifiable information is included in reports or on our webpages.

Only a limited number of CRANE project team staff have access to the secure database where personal information is stored. Additional personal information such as details sent in emails, may be summarised, and added to the database if necessary to maintain a complete record of your interactions with the CRANE Team.

As described in our information leaflet, we share a small amount of patient information with health and education data providers for data linkage purposes. This helps us better understand how cleft patients are affected in areas such as education and healthcare.

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

This linkage, explained in the CRANE Data Flow Diagram, enables us to report on differences in outcomes such as school performance based on cleft type, other medical conditions and families. No identifiable information about individual children, their families, or their schools is included in our reports.

In rare and cases, we may be legally obligated to share information with the police or other authorities under exceptional circumstances. When this arises, we will share this information under legal obligation or under vital interest, depending on circumstances.

Outside of the circumstances described above, we do not give, trade, or sell your information to third parties without your consent.

 

Storing your data

We store your data in two primary locations as outlined 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 and operates under a System Level Security Policy (SLSP). This framework ensures the secure and effective management of information gathered and held for the CRANE Database by the Royal College of Surgeons of England, safeguarding patient confidentiality.
  • CRANE’s secure servers at the Royal College of Surgeons (RCS) of England: These servers store CRANE files, including temporary copies of mailing lists, correspondence records (e.g., letters we have sent to you) and any information you shared with us via email. Your data is stored securely, and our security measures comply with current best practices.

All data storage locations comply with strict UK and EU data security regulations. Crane database is stored in UK however, in some circumstances, your data might be accessed from other locations for the purposes of technical support or Microsoft services.

By submitting your personal data to us, you consent to its transfer, storage, and processing in these locations. We take all reasonable measures to ensure your data is handled securely and in accordance with your right to privacy. Those measures include, for example, ICO and/or EU Standard Contractual Clauses for International Data Transfers.

Your data will be retained as long as it is necessary to fulfil the purposes described in this Privacy Policy as required by law.

 

Your Rights

At any time, you can contact us via [email protected] or by calling 020 7869 6515 to:

  • Request that CRANE change or remove some or all the information we hold about you.
  • Request that CRANE update the way we contact you or adjust the type of content you receive.
  • Request a full record of all the information we hold about you as through a Subject Access Request under GDPR.
  • When we process your data under legitimate interest, you may have a right to object or restrict how we process your personal data.

We are committed to honouring such requests and try to make the process as simple as possible 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 other websites.

If you are dissatisfied with how we manage your data and your concerns remain unresolved, you have the right to file a complaint with the Information Commissioner’s Office (ICO). Visit their website to submit a complaint: https://ico.org.uk/make-a-complaint/.

 

Cookies

This website puts small files (known as ‘cookies’) onto your computer to collect information about how you interact with the site. You may stop or restrict the placement of these cookies on your computer. This is done by adjusting your web browser preferences; however, this may interfere with some of the features of the site.

These cookies are used to measure how you use the website and allows us to implement changes, based on your needs, to improve the site.

For more details, please see our cookie policy.

 

This Privacy Policy

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

By continuing to use our website, you agree to any updates made to this policy.

 

Contact

If you wish to  update your information, change how we communicate with you, or opt out of communications entirely, you can contact us at [email protected] or call us on 020 7869 6515. We will process your request promptly without further information.

For questions and comments regarding this policy or CRANE’s data handling practices please contact us at [email protected]. Your query will be forwarded to the Data Protection Officer.

 

Current Data Protection Officer:
Katarzyna Wieckowska
Data Protection Officer

[email protected]
Royal College of Surgeons (RCS) of England

 

Last reviewed: January 2025

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