Cholangiocarcinoma Care in the UK: Organisational Audit of Regional HPB Units
How we will use your information
Health Data Insight C.I.C. (HDI) is conducting this organisational audit to capture a national overview of how Regional Surgical Hepatobiliary Units across the UK are organised in relation to the management of cholangiocarcinoma (CCA). The audit is funded by AMMF – The Cholangiocarcinoma Charity and is conducted in collaboration with the British Society of Gastroenterology (BSG), Cholangiocarcinoma UK (an affiliate of the British Association for the Study of Liver Disease, BASL) and NHS clinical and academic partners across the UK. HDI is the data controller for this audit.
The information you provide about your unit (staffing, clinical practice, surgical activity, waiting times, research and follow-up) is organisational information about the hospital, not personal information about individuals or patients.
Every respondent is asked to provide their name and work email address. These are the only personal data we collect from you. We need them so we can follow up on your responses, share the audit findings with you, and (if you wish) discuss future collaboration.
What we do with your information
The project team — which includes named members of HDI, AMMF and NHS clinical and academic partners — has access to individual responses in order to analyse the audit data. All project team members are bound by confidentiality and data-handling undertakings.
We may use your work email address to:
- contact you to clarify any responses where needed;
- send you a copy of the audit findings;
- contact you about future research or service-development projects connected to the audit, where you have indicated interest in collaboration.
We will not use your email address for marketing.
After analysis, only aggregated findings (which do not identify individual units or respondents) will be shared with AMMF, BSG, Cholangiocarcinoma UK and wider NHS partners, and may be published. Your individual response and your contactdetails will not be shared with these organisations.
Our lawful basis
We rely on Article 6(1)(f) of the UK GDPR – legitimate interests. Our legitimate interest is conducting a national audit of CCA care to support service improvement for NHS patients. We have completed a Legitimate Interests Assessment and concluded that this processing does not override your rights and freedoms.
Who can see your information
Your individual responses and the contact details you provide are accessible to named members of the project team — HDI staff and designated collaborators from AMMF and NHS clinical and academic partners — who are each bound by confidentiality obligations. Survey responses are stored within HDI’s Microsoft 365 environment hosted in the UK/EU.
How long we keep your information
We will keep your contact details for the duration of the audit and any follow-on collaboration you have agreed to, and for up to 5 years after audit completion, after which they will be securely deleted. Aggregated, non-identifying audit findings may be retained and published indefinitely.
Your rights
Under UK GDPR you have the right to access your personal data, ask us to correct or erase it, restrict or object to its processing, and to data portability. Because we rely on legitimate interests, you have a particular right to object under Article 21 – if you do, we will stop processing your contact details unless we have compelling legitimate grounds to continue.
If you have any questions about this notice, or you would like to exercise any of these rights, please get in touch with us at admin@healthdatainsight.org.uk and we’ll be happy to help.
If you are unhappy with how we have handled your information, you also have the right to complain to the Information Commissioner’s Office at ico.org.uk or on 0303 123 1113.
Contact
Controller: Health Data Insight C.I.C., CamLife 4, Capital Park, Cambridge Road, Fulbourn, CB21 5XE, UK.
General enquiries and rights requests: admin@healthdatainsight.org.uk