Data Collection

Data collection is an important part of driving service improvement and quality of care throughout the National Health Service. In Scotland, from July 2016, information on patients aged 0 - 24 years who have had a diagnosis of cancer, will be collected by healthcare professionals and stored in the Scottish Cancer Registry for Children & Young People.

Historically, information for young cancer patients aged 0 – 15 years in Scotland, was collated by the UK National Register of Childhood Tumours (UK NRCT) in Oxford. Information for those patients aged 16 - 24 years at diagnosis was collated by the Children/Teenagers and Young Adults (CTYA) Registry (based at the North West Cancer Intelligence Service in Manchester); this was overseen by the NCIN CTYA Site Specific Clinical Reference Group (SSCRG).

In June 2013 there was a UK wide decision to dissolve these arrangements. Subsequently, the MSN for Children & Young People with Cancer worked towards developing and rolling out a new registry for young cancer patients in Scotland, the Scottish Cancer Registry for Children & Young People with Cancer. 

Why collect this information?

We need to know whether we are doing a good job for children and young people with cancer in Scotland and identify any areas where we can do better. The information collected in the new registry helps us measure this.

The cancer registry collects information including patient-identifiable information; this is used to: assess how well cancer services for children and young people are performing, evaluate treatment options for patients, support research into the possible causes of cancer and new treatment regimes, and to ensure that there is support after treatment.

 What information is collected?
  • Patient information (including patient-identifiable data)
  • Diagnostic data including Pathological and Histological data
  • Scans/images of the patient
  • Treatment details and clinical trial participation
  • Treatment centre and health board details
  • Treating consultant
  • Important dates such as appointments, scans, operations and treatments
Patient-Identifiable Information - What is this?

The Scottish Executive Health Department (SEHD) defines patient identifiable information as a data set which may include some or all of the following: an image of the patient, the patient's name, address, full post code or date of birth.

The personal information that is collected in the registry is required for the following important purposes:

1. Healthcare teams (Multi-disciplinary teams comprised of many specialists) provide patient-centred care – this means treatment options are planned and tailored to the individual. An example of this is identifying individuals who require fertility preservation.

2. Having patient information in one single repository allows the sharing of information between healthcare specialists in a safe, timely, efficient, confidential process.

3. Patient information enables the analysis and reporting of cancer information in Scotland. Data collection allows the evaluation of service provision i.e. we need to evaluate what services are needed in Scotland and for how many young cancer patients, to ensure we are providing the highest quality of care to all patients, no matter where they live in the country.

Who has access to cancer registration data?

A limited number of healthcare professionals and administration staff who are employed by NHS Health Boards across Scotland, have access to the registry; all are trained to handle sensitive patient data and to understand the importance of patient confidentiality.

Security and Data Confidentiality

Users of the registry must complete Information Governance training and provide evidence of this before they are allowed access to information held within the registry. The MSN for Children & Young People with Cancer ensures that measures are taken to preserve the security of the registry and all users adhere to the security policies set out below: 

  • Access to Health Records Act 1990 (where not superseded by the Data Protection
  • Act1998)
  • Audit & Internal Control Act 1987
  • Computer Misuse Act 1990
  • Data Protection (Processing of Sensitive Personal Data) Order 2000
  • Data Protection Act 1998
  • Electronic Communications Act 2000
  • Freedom of Information (Scotland) Act 2002
  • Human Rights Act 1998
  • NHS Code of Practice on Protecting Patient Confidentiality
  • National Health Service Act 1977
  • Public Interest Disclosure Act 1998
  • Public Records (Scotland) Act 2011

Information security is the responsibility of all registry users, whether inputting data or viewing/reporting information; users are required to ensure approved guidelines and best practice are followed at all times.

The use of patient identifiable information by NHS Scotland is subject to:

  • statute, in particular the Data Protection Act 1998 and the Human Rights Act 1998
  • the common law
  • standards set by professional bodies
  • the policies and organisational standards of the Scottish Executive Health Department (SEHD) and NHSScotland

 For more information please go to the Scottish Executive Health Department (SEHD) website.

The MSN for Children & Young People with Cancer have created a Governance Framework document which all registry users must adhere to; this document lists all legislation and policies that must be complied with when using the registry.

Data Sharing

The MSN for Children & Young People with Cancer implements strict controls about the sharing of any of the information we hold on the registry. It is beneficial for healthcare specialists to share information in order to plan and treat patients throughout Scotland.

Multi-disciplinary teams meet on a regular basis to plan and review the care of patients; the availability of patient data on the Scottish Cancer Registry for Children and Young People allows effective and timely decision making. Another benefit of information sharing using the registry is the educational value of learning from patient cases.

Staff that access the registry must comply with the Information Sharing policies below:

  • Scottish Accord for Sharing Personal Information (SASPI) General Information Sharing Protocol SASPI & Legacy Information Access Protocols Email Information Transfer Protocols
  • Caldicott Approval Procedure
  • The Information Assurance (IA) Strategy emphasises the need for NHS Boards to focus on using the information they hold responsibly and with care. (CEL 26 2011 – NHS Scotland Information Assurance Strategy)
Opting out of Cancer Registration

The MSN for Children & Young People with Cancer is grateful to all patients and parents that agree to share health information as it allows the sharing of information between teams of specialists across Scotland and thus, timely and effective decision making, but also understands that you may not wish to.

It is entirely your decision whether you allow your or your child’s health information to be collected by the Scottish Cancer Registry for Children & Young People with Cancer. You have the right to opt-out at any time and can do this easily by informing your doctor. If you need help with this decision, you can discuss it with your doctor or nurse specialist.

Patient Consent

It is not always possible to inform patients/parents of data collection for healthcare purposes at the start of their treatment however there are circumstances where information can be collected and used for health and research purposes (e.g. audit) without the explicit consent from patients / parents. NHS Scotland Caldicott Guardians: Principles into Practice (Part 5) states:

In the context of healthcare there is a specific medical purposes condition under Schedule 3 of the Data Protection Act which means that in most cases, where the processing of health information relates to medical and care purposes, explicit patient consent does not have to be obtained.

As the enhanced cancer registry for children and young people is a database primarily used as a healthcare reporting tool to enable assessment of care provision (e.g. treatment statistics, service provision), patient confidentiality is not compromised where data protection principles are adhered to (a requirement by all users of the registry).

The MSN for Children & Young People with Cancer gained approval from the Public Benefits and Privacy Panel (PBPP) with regard to fulfilling all information governance requirements for the registry. The PBPP forms part of the scrutiny process operated across Scotland by a newly formed Public Benefit and Privacy Panel for Health and Social Care.

If you have any questions please contact us by using the Contact Form on this website.