Child and adolescent psychiatry surveillance system (CAPSS) privacy notice

The Royal College of Psychiatrists (the College) hosts the Child and Adolescent Psychiatry Surveillance System (CAPSS) which uses surveillance methodology developed by the British Paediatric Surveillance Unit to facilitate the epidemiological surveillance of rare psychiatric diseases and events in the United Kingdom and Republic of Ireland.

The College is the data controller for the information you provide as part of the surveillance system.

If you have any queries about the process or how we handle your information, please contact us at  

For clinicians contributing to the CAPSS reporting system, their name, hospital address, email, speciality, reporting rates and case conditions reported are held by CAPSS.

Through monthly electronic reporting cards, CAPSS collects a report of whether participating clinicians have seen a case for the condition(s) we are carrying out surveillance for.  We also collect comments from participating clinicians which is used to update their contact details (e.g. retirement, change of email address).

New clinicians are identified via Certification of Completion of Training lists, via the CAPSS Executive Committee and RCPsych membership lists.

Data are submitted via a secure web-based tool.  Security and confidentiality is maintained through the use of passwords.

All the information you provide will only be used for the purpose for which you provided it or to fulfil business, legal or regulatory requirements if necessary.

CAPSS will not share any of the information provided to us with any third parties for marketing purposes. Information is held in secure data centres in the EU and US which comply with ISO 27001 security standards. All the data is accessible only to staff members working on CAPSS and data processors by approval. All data is held within restricted areas, is password protected and encrypted.

Notification of reported cases are sent to the research team for the condition/event under surveillance so they can communicate with the reporting clinician and collect further data. The information passed to the research team is the clinicians name, email address and hospital address. Confirmation of a case is conveyed back to the CAPSS team. CAPSS holds no clinical details on the case.

All CAPSS studies have the appropriate ethics and governance requirements. Further information can be found on the respective study webpages.

Collated regional, national and case reports are published in CAPSS reports. No identifiable information is included in the reports.

CAPSS does not collect more information than we need to fulfil our stated purposes and will not retain it for longer than is necessary.  We process the following information: 

  • Clinician’s name
  • Contact information including their hospital address and email address(es)
  • GMC number
  • Speciality
  • Reporting rates and the case conditions reported.

Participation in CAPSS is voluntary, although we strive for full participation as there is a clear public interest in undertaking this work.  By contributing to the surveillance system, you are agreeing for the information that we collect to be used for the following purposes:

  • Facilitate the epidemiological surveillance of rare psychiatric conditions and events
  • Monitoring your compliance to the surveillance system
  • Monitor regional compliance rates
  • Monitor regional case reports to allow for identification of possible case under ascertainment
  • To send re-validation certificate to those who contribute
  • To inform you of CAPSS activities and events and receipt of e-newsletter.

Data processors are third parties who process data for us.  We have contracts in place with our data processors.  This means that they cannot do anything with the information unless we have instructed them to do it. All the information provided to our data processors is pseudonymised and they will not share your personal information with any organisation apart from us.  They will hold it securely and retain it for the period we instruct.

The data processors we use are:

  • Software providers/hosts for databases which hold the data (Snap Surveys Ltd).

We will only retain your information for as long as you consent, or we will retain it for 20 years until the data is reviewed for permanent preservation for historical research purposes, in line with current MRC guidance. As soon as you withdraw consent, we shall suppress your details.

Under the Data Protection Act 2018 and General Data Protection Regulation (GDPR), you have rights as an individual which you can exercise in relation to the information we hold about you.

The legal basis for us processing your information is by consent as this surveillance system is voluntary and you can therefore withdraw at any time.

You can find out which personal information we hold by making a ‘subject access request’ under the Data Protection legislation.  If we do hold information about you we will:

  • Give you a description of it
  • Tell you why we are holding it
  • Tell you who it could be disclosed to
  • Let you have a copy of the information in an intelligible form.

To make a request for any personal information we may hold you need to put the request in writing addressing it to our Data Protection Officer, at the address provided below.

If you agree, we will try to deal with your request informally, for example by providing you with the specific information you need over the telephone.

If we do hold personal data about you, you can:

  • Ask for incorrect data to be amended
  • Ask for data to be erased where there is no longer an ongoing need for processing
  • Ask for access to your data to be restricted
  • Ask for a copy of your personal data in a format that allows you to easily transfer it into another organisation
  • Object to the processing of your personal data and your objection will be considered

If you wish to exercise any of these rights please contact us using the details below.

The College takes any complaints we receive about the way in which we use personal data very seriously. We encourage people to bring it to our attention if they think that our collection or use of information is unfair, misleading or inappropriate. 

If you want to make a complaint about the way we have processed your personal information you can contact us using the details at the bottom of this notice.

You can also complain to the Information Commissioner’s Office directly:

Wycliffe House

Visit the ICO website

Phone: 0303 123 1113

We keep our privacy notice under regular review. This Privacy Notice was last updated in January 2019.

If you want to request information about our privacy policy you can email us at or at the below address:

Data Protection Officer
Royal College of Psychiatrists
21 Prescot Street
E1 8BB

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