Glossary

 

Terms for parents and children who have received a survey 

The terms below might be useful to those who receive a survey.

For help with any clinical or medical terms, please refer to the Children’s Cancer and Leukaemia Group website (https://www.cclg.org.uk/About-Childhood-Cancer/Medical-terms-explained). 

Anonymous (or you may also hear the words unnamed or unidentified)
If a person is anonymous it means that we do not know their name or who they are.

When a survey is run, and people tell us about their experiences, we may anonymise their responses. This means that we will take out any information that might tell us who that person is. For example, their name, address and telephone number. 

Confidential (or you may also hear the words secret or private)
If something is confidential it means that it will be kept secret and not shared with anyone that it should not be. For example, when we sent you a survey we used your name and address. But we would never share your name and address with anyone else who does not need to know it. 

When you fill in the survey, we will not put your name and address with your answers. This means that what you tell us is confidential.

Confidentiality Advisory Group (CAG)
To run the survey, we need to know some things about you, like your name and address. For us to get this information, we ask permission from the Confidentiality Advisory Group. 

Data controller
To run this survey we need to know some things about you. For example, your name and address. This information is your data. We make sure that someone looks after your data. This is so that no one can see it or use it who should not. This person is called the data controller. 

Data processor (or you may hear the words information processor)
The information we need about you to run the survey, like your name and address, is processed or used. An organisation called Picker is the data processor for this survey. This means that Picker will be processing or using your information to run the survey.

General Data Protection Regulation (GDPR)
When we use your information, such as your name and address, to run the survey, we must follow the law. The GDPR sets out some of the rules we must follow.

National Data Guardian opt-out
The national data opt-out was introduced on 25 May 2018, enabling patients to opt out from the use of their data for research or planning purposes, in line with the recommendations of the National Data Guardian in her Review of Data Security, Consent and Opt-Outs. Please note that the National Data Guardian opt-out does not apply to this survey. 

NHS (National Health Service)
The NHS gives healthcare in the United Kingdom. The NHS is made up of lots of different organisations such as hospitals, and has lots of people working in it, such as doctors and nurses.

NHS England 
NHS England is the organisation that leads the National Health Service (NHS) in England.

Paediatric Oncology Shared Care Unit (POSCU)
Most children have cancer treatment at hospital. Some children have their cancer treatment at a special kind of hospital, called a POSCU. Other children have their cancer treatment at a different kind of hospital, called a Principal Treatment Centre (PTC). 

Patient Advice and Liaison Service (PALS)
The Patient Advice and Liaison Service (PALS) gives people help and information about things to do with healthcare. Each hospital has a PALS.  

Personal data (or you may hear the words your information or information about you)
Personal data is information that tells us things about you. For example, your name, address or birthday. 

Picker
Picker are a healthcare research charity. They are based in Oxford in England. Picker have been asked to run the survey for NHS England.

Principal Treatment Centre (PTC)
Most children are told that they have cancer at hospital. Those hospitals are usually a special kind of hospital, called a PTC. Some children will have all of their cancer treatment at a PTC. Other children will have some of their treatment at a different kind of hospital called a Paediatric Oncology Shared Care Unit (POSCU). 

NHS Number
Each patient has an NHS number. The number has 10 digits, like 485 77 3456. The number helps healthcare staff, like nurses, to know who you are.

NHS Trust
An NHS Trust is an organisation that gives healthcare. An NHS Trust might provide hospital services to patients. 

Section 251 Approval 
To run the survey, we need to know some things about you, like your name and address. For us to get this information, we ask permission from the Confidentiality Advisory Group. If the group say that we can run the survey, they give us Section 251 approval. This approval means that we can have your information, such as your name and address, to run the survey.

 

Technical terms 

The terms below might be useful for NHS Trusts (e.g. Principal Treatment centres) taking part in the survey. They relate to sampling, analysis, reporting, data protection, information governance and confidentiality. 

Anonymisation
The process of removing information that may lead to an individual being identified. A survey respondent may be identified from their name, address, postcode, telephone number, photograph or image, or some other unique personal characteristic. Healthcare staff might also be identified if a survey respondent writes the staff name on the survey.

Attribution
Ensuring survey results are linked to the correct place (e.g. a healthcare service or NHS site). This is particularly important where there are multiple providers involved in different parts of a person’s care or treatment. 

Benchmarking
Comparing performance, for example between different organisations or services to identify variation and opportunities for improvement. High performing organisations can help others improve through providing case studies etc.

Bias
When survey responses do not reflect the true feelings, views or perceptions of the respondent, making the survey findings less valid and meaningful. Bias can never be eliminated in full, but researchers should try to minimise it.

Census
As opposed to surveying a sample from the population, census surveying is where we invite everyone in our target population to take the survey. If everyone takes part in the survey (which is unlikely), then we have conducted a census. Otherwise, we have data from a sample. 

Closed question
As opposed to an open question that generates a text/written response, a closed question has a set list of response options to select from. 

Confidentiality
Confidentiality involves ensuring that patient information is handled appropriately and not shared with those who do not need to see it to carry out the survey. Patient information includes personal data used to conduct the survey (e.g. names and addresses) and data collected from a respondent (e.g. responses to survey questions). Lack of confidentiality may lead to low response rates or a respondent changing how they choose to answer questions. 

Confidentiality Advisory Group (CAG)
An organisation providing expert advice on the use of confidential patient information.

Data cleaning
The necessary process of examining data returned from survey respondents that are incorrect or invalid. Those data are either deleted or corrected. 

Data controller
A person or organisation who determines why personal data will be processed (e.g. for the purpose of conducting a survey) and how it will be processed (e.g. by collecting information from NHS Trusts). The data controller for the Under 16 Cancer Patient Experience Survey is NHS England. 

Data processor
A person or organisation which processes personal data for the data controller. The data processor for the Under 16 Cancer Patient Experience Survey is Picker.

Data suppression
When results or data is not displayed due to low numbers of respondents. This is done for reasons relating to anonymity (e.g. to protect the identity of respondents or staff), as well as data quality and statistical robustness (e.g. we are unable to use data from a small number of respondents to reliably understand care).

Fieldwork 
The duration of time when the survey is open for completion.

General Data Protection Regulation (GDPR)
A set of EU-wide data protection rules that have been brought into UK law as the Data Protection Act 2018.

National Data Guardian opt-out
The national data opt-out was introduced on 25 May 2018, enabling patients to opt out from the use of their data for research or planning purposes, in line with the recommendations of the National Data Guardian in her Review of Data Security, Consent and Opt-Outs. The Department of Health and Social Care has confirmed that the National Data Guardian opt-out does not apply to this survey. This exclusion applies for the first two years that the survey is run and will be reviewed thereafter.

NHS Long Term Plan
A plan for the NHS to improve the quality of patient care and health outcomes. It sets out how the £20.5 billion budget settlement for the NHS, announced by the Prime Minister in summer 2018, will be spent by 2023/2024.

NHS Number
The NHS number is a 10-digit number, like 485 777 3456, linked to individual patients. It helps healthcare staff and service providers identify patients correctly and match their details to their health records.

Non-response bias/participation bias/response bias
A bias introduced into the data set by those who chose to not participate, where it is likely that those who do participate will hold different views from those who do not.

Numeric scale
Where the respondent is presented with an ordered set of whole numbers from which to choose, for example 1 to 5 or 1 to 10. This is combined with descriptive words alongside some or all of the numbers on the scale, such as “Strongly agree” or “Strongly disagree.” 

Open questions
As opposed to a closed question which has a set list of response options to choose from, open questions ask for a free-text/written response from the respondent.

Paediatric Oncology Shared Care Unit (POSCU)
A paediatric oncology shared care unit (POSCU) is a hospital nearer to the child's home e.g. District General Hospital. The POSCU works with the Principal Treatment Centre (PTC), to offer the child supportive care closer to home e.g. blood transfusions, antibiotics, blood tests.

Patient Advice and Liaison Service (PALS)
The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers.

Patient consent
Agreement from patients to take part in a survey/research/treatment/a medical procedure.

Personal data
The personal information used to identify a person e.g. name, address, gender, date of birth, ethnicity and NHS Number.

Picker
Picker are a healthcare research charity based in Oxford who are partnering with NHS England to deliver the Under 16 Cancer Patient Experience Survey.

Population
The group of people that the survey applies to (for example the Under 16 Cancer Patient Experience Survey applies to people aged under 16 who have recently received cancer care, or care for some non-malignant tumours). 

Pseudonymisation
A technique that replaces or removes information in a data set that identifies an individual. This may involve replacing names or other identifiers which are easily linked to individuals with, for example, a reference number.

Recall bias
A type of bias that occurs when respondents do not remember a previous event accurately because the survey took place too long after the event. The validity of responses could be in doubt if there is recall bias.

Research Governance Framework
This outlines the principles of good research practice and is key to ensuring that health and social care research is conducted to high scientific and ethical standards.

Routing
Directing people to only answer survey questions that are relevant based on answers to earlier questions. For example, “If you have answered yes at question 3, go on to question 6”.

Sample
The people within a population who are chosen to take part in the survey.

Section 251 Approval 
Section 251 Approval allows NHS Trusts to provide Picker with personal data (e.g. patient names and addresses) without specific consent from patients, so that Picker can carry out the survey. Section 251 Approval is granted by the Confidentiality Advisory Group (CAG) following their review and approval of the survey process.

Survey
A research method used to collect data from a select group of respondents to gain information about a topic of interest.

Survey fatigue
When members of the population become tired of repeated survey invitations that they stop taking the survey. This can introduce a participation bias (also known as: non-response or self-selection bias).