Data Collection and the Scottish Cancer Registry for Children & Young People with Cancer
In line with national NHS Scotland guidance, cancer care for people of all ages is guided by specialists who work together in multidisciplinary teams (MDTs). Each MDT consists of the people who are experts in the care of cancer of different types. Some MDTs focus on specific kinds of cancer (e.g. leukaemia or bone cancer) and others on specific age groups (children, young people). This helps to ensure that everyone with cancer is offered the best care for their particular situation.
You or your child’s cancer diagnosis and its treatment will be discussed by the team with expert knowledge of the kind of cancer you or they have. In addition, all young people aged 16 to 24 years are discussed by a TYA (Teenage Young Adult) MDT. The professionals who attend the MDTs come from different professional backgrounds and from different organisations, but they all work within the NHS and are all specialists in children and young people’s cancer care. They are all required to keep any information they discuss confidential and only to share information about you that is relevant to your cancer care.
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.
Data collection is therefore an important and imperative aspect of driving service improvement and quality of care throughout the National Health Service in Scotland.
Why collect this information?
The clinical teams regularly review the information collected by the MDTs, and the recommendations it makes, so that the care offered to all children and young people it works with can be improved in the future. The information collected in the registry helps us measure this. Importantly no information which identifies you or your child individually will be shared with anyone other than those involved in the MDT discussions and in treating you or your child.
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 is collected?
- Patients name and address
- Details about their cancer diagnosis
- Information on type of treatment delivered
The registry can also collect information on outcomes, such as:
- Date treatment ended
- Whether a cancer has returned
- If someone has died, the date of death and cause of death
Is the information safe?
There are strict rules about how cancer registry information is stored, accessed and used.
The MSN for Children & Young People with Cancer ensures that personal information is only accessible to authorised people. The following security measures are in place to protect personal information:
- All NHS staff undertake mandatory training in Data Protection and IT Security
- Compliance with NHS Scotland Information Security Policy
- Organisational policy and procedures on the safe handling of personal information
- Access controls and audits of electronic systems
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.
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, or you can email the MSN for Children and Young People with Cancer at tay.msncypc@nhs.scot