Find answers to some of the frequently asked questions about the running of the National Cancer Patient Experience Survey, including the role of participating organisations.
The purpose of collecting and analysing data via this survey is to:
This collection is mandated for all adult acute cancer services. NHS foundation trusts are mandated under schedule 6 of their Terms of Authorisation.
There are important direct benefits for participating NHS trusts:
The survey will cover all acute and specialist NHS trusts in England that provide adult acute cancer services. All adult patients (aged 16 and over), with a primary diagnosis of cancer, who have been admitted to hospital as inpatients for cancer related treatment, or who were seen as day case patients for cancer related treatment and have been discharged between April and June each year will be included in the survey.
The survey sample does not include patients who were seen as outpatients for cancer related treatment and have been discharged during the sampling period (April to June each year).
We recognise that this is a shortcoming of the sampling approach.
Over the last few years, responding to stakeholder requests, we have explored ways to widen the scope of the sampling approach so that patients who solely have outpatient appointments could be included in the sample. After thoroughly exploring different approaches, such as inclusion of such patients in the list produced locally by Trusts and use of national datasets including cancer registration, we have not been able to find an approach that meets the criteria of being timely, accurate, consistent and low burden.
With regards to asking Trusts to include outpatients when drawing samples, we found that data quality in relation to outpatients varies across Trusts, with ICD-10 codes not consistently recorded. Any other approach would significantly increase burden for Trusts.
A range of possible national datasets were considered as an alternative to constructing the sample. This included the National Cancer Registration, Rapid Registration data, Hospital Episode Statistics (HES), Systemic Anti-Cancer Treatment data and the Radiotherapy data. However, after review and deliberation it was determined that these datasets would not be suitable for the purpose of NCPES.
The scoping considered whether it would be possible to use Cancer Waiting Times (CWT) data. It was determined that it would be possible to extract a sample which includes outpatients from Cancer Waiting Times (CWT) data. However, drawing a sample from CWT would be based on ‘first treatment date’ and would result in significant disadvantages compared to the current sampling approach. For example:
NHS England and the NCPES Advisory Group concluded that there is not a clear enough case that the benefits of changing to the CWT sampling approach would outweigh these disadvantages.
In summary, there has been a good deal of work to explore various ways in which patients receiving only outpatient appointments could be brought into the NCPES survey sample but unfortunately this has not yielded a viable approach that, on balance, has more advantages than disadvantages.
In mitigation for this, we continue to encourage Trusts and systems, via our work with Cancer Alliances, to consider NCPES as one source of insight and feedback, and to pursue other opportunities for gathering insight and feedback across the community of cancer patients that they serve.
NHS trusts are asked to follow the survey instructions provided by Picker to put together the list of names of patients that have been treated for cancer. This includes removing the names of any patients who have died or have not been told about a confirmed diagnosis.
NHS trusts are also asked to respond to any queries Picker may have regarding their patient list within two working days. This is to reduce any delays in approval.
All other survey work, including removal of duplicates, DBS checks, printing and posting surveys and reminders, data entry and producing reports, will be carried out by Picker.
Picker will work with NHS trusts to arrange appropriate data security agreements. NHS trusts will be asked to:
You can find a communications toolkit including a range of useful products, such as posters and social media assets, on the promoting the survey page to support this.
You can use the contact us page to get in touch with Picker and they will tell you how to return the survey.
NHS England’s lawful basis for carrying out the survey is covered as a ‘public task’ under Article 6(1)(e) of the UK General Data Protection Regulation (GDPR). This provides a lawful basis for processing personal data where:
“…processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller”.
In addition, NHS England’s lawful basis for using special category (health) data to carry out the data is covered under Article 9(2)(h) of the GDPR:
“9(2)(h) processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3…”
No. The Department of Health and Social Care has confirmed that the National Data Guardian Opt Out does not apply to this survey.
The list of exemptions and policy postponements provides more information.
Yes. Patients can opt out of the survey ahead of their details being shared with Picker. They can do this by responding to the fair processing notice presented by the NHS trust. NHS trusts should keep records of those who have opted out ahead of the survey sample being drawn and ensure that those patients are not included in the sample submitted to Picker.
In addition, the survey covering letter, first and second reminder letter, and questionnaire front cover will emphasise that participation in the survey is entirely voluntary and provide details of how to opt out of the survey. Patients will be provided with Picker’s contact details to allow them to opt out of the survey. Should patients contact the NHS trust and ask to be opted out of the survey instead, please notify Picker.
Please note that patient opt outs of the cancer registry held by the National Cancer Registration and Analysis Service are not applied to the survey.
It is not practicable to seek patient consent before sending out surveys. Therefore, ahead of contacting NHS trusts to share patient data for the purposes of the survey, NHS England and Picker ensure that approval under Section 251 of the NHS Act 2006 is in place. Section 251 approval allows us to carry out the survey without requiring consent. However, patients must be given the opportunity to opt out, and this is achieved via fair processing notices displayed by the NHS trust in areas where people receive cancer care.
Picker takes its information security responsibilities seriously and applies various precautions to ensure your information is always protected from loss, theft, or misuse.
Picker has regular internal and external audits of its information security controls and working practices and is accredited to the International Standard for Information Security, ISO 27001.
Picker is compliant with the Data Security and Protection Toolkit which enables organisations to demonstrate that the way they hold, and process information meets information governance policies and standards. The NHS trust must ensure that patient personal data is shared securely with Picker by following the guidance provided in the sampling handbook/guidance manual.
Only evaluative questions in the questionnaire are scored. These are the questions that ask patients about the quality of their experience. The score shows the percentage of respondents who gave the most favourable response to a question.
For each evaluative question, responses are identified as positive, negative or neutral. Scores are calculated by dividing the number of positive responses by the total number of positive and negative responses. Neutral scores (e.g., ‘Don’t know / can’t remember’) are excluded from this calculation.
Some questions are descriptive, and others are ‘routing questions’, which are designed to filter out respondents to whom the following questions do not apply. These questions are not scored.
Adjusted scores allow for fair comparisons to be made between different organisations as these scores are adjusted to take into account the proportion of patients within five sub-groups: age, ethnicity, male/female/non-binary/other, cancer type, and area-level deprivation (IMD quintile).
Adjusted data, together with expected ranges, should be used to understand whether the results for a specific organisation are significantly higher or lower than national results taking account of their patient population.
Unadjusted scores should not be used to make comparisons. They should be used to see the actual responses from patients relating to the organisation and also to track trends over time.
The scores for each organisation for each question are an estimate of the score from the population, based on the responses received. Assuming the sample is representative of the organisation, confidence intervals are a method of describing the uncertainty around these estimates.
We report 95% confidence intervals around the results. The 95% confidence interval is a way of describing how certain we can be about our estimates. If we were to repeat the survey 100 times with different groups of people, we would expect the ‘true’ score to be within the 95% confidence interval 95 times out of 100.
When a confidence interval is wide (a big difference between the lower and upper bound), there is uncertainty around the true value. If there is an overlap between the intervals around two different scores, it means we cannot be certain whether there is a difference between them.
Results are produced that show how each organisation scored for each evaluative question in the survey, compared with other organisations that took part. We do this by calculating the expected range.
This is the range we might expect the score for an organisation of a certain size to lie within if they are within the core of the distribution of performance between organisations (this allows for smaller sample sizes that may give a misleading view). As such, the organisations outside this range are flagged as outliers, performing above or below what is expected for most organisations
This approach is designed to help understand the performance of individual organisations and identify areas for improvement. A full explanation of the methodology can be found in the Technical Document on the Survey instructions page.
Data is suppressed for two reasons: to ensure unreliable results based on very small numbers of respondents are not released, and to prevent individuals being identifiable in the data.
In cases where a result is based on fewer than 10 responses, the result has been suppressed. For example, where fewer than 10 people answered a question from a particular organisation, the results are not shown for that question for that organisation.
For organisations with an eligible population of 1,000 or fewer, data relating to the respondent and their condition has been suppressed where 5 people or fewer were in a particular category. In instances where only one has been suppressed, the next lowest category has been suppressed to prevent back calculation from the total number of responses. For a full list of the data which this applies to, please see the Technical Document on the Survey instructions page.
The National Cancer Patient Experience Survey includes voluntary self-reported information covering six of the nine protected characteristics:
All definitions of protected characteristics are taken from https://www.equalityhumanrights.com/equality/equality-act-2010/protected-characteristics. The Equality and Human Rights Commission (EHRC) is the regulatory body in respect of the Equality Act 2010.
In addition, the survey collects information on the following:
Age
Definition of protected characteristic: “A person belonging to a particular age (for example 32 year olds) or range of ages (for example 18 to 30 year olds).”
The National Cancer Patient Experience Survey collects information on the protected characteristic of age by asking participants to write in their year of birth.
In the published reports for the National Cancer Patient Experience Survey, age is reported using sample data provided from the Trust (date of birth of patient) and grouped into categories of: 16-24; 25-34; 35-44; 45-54; 55-64; 65-74; 75-84; 85+.
Disability
Definition of protected characteristic: “A person has a disability if she or he has a physical or mental impairment which has a substantial and long-term adverse effect on that person’s ability to carry out normal day-to-day activities.”
A diagnosis of cancer or certain other conditions also means that the individual is defined as having a disability under section 6 of the Equality Act 2010.
The National Cancer Patient Experience Survey questions about disability are:
The protected characteristic of disability could be derived in the manner described above, however disability is not currently included in the published reports. The published reports include analysis of each long-term condition included in the survey. For example, it is possible to analyse the experiences of those living with diabetes.
Gender reassignment
Definition of protected characteristic: “Where a person undergoes, or proposes to undergo, a process for the purpose of reassigning their sex.”
We have sought to use a proxy measure for gender reassignment based on the responses to the following questions:
The National Cancer Patient Experience Survey collects information on the protected characteristic of gender reassignment in the manner described above. For example, a response to the first question of “female” and a response of “no” to the second question, could suggest that the individual self-reports that they are a transgender woman and has the protected characteristic of gender reassignment.
We are aware of limitations to both of these questions and they are currently under review by NHS England. We are also closely engaging with the GSS Harmonisation team review into this area.
In the published reports, we do not derive gender reassignment using these questions. We report answers to the two questions separately.
Race
Definition of protected characteristic: “A race is a group of people defined by their colour, nationality (including citizenship) ethnicity or national origins. A racial group can be made up of more than one distinct racial group, such as Black British.”
The National Cancer Patient Experience Survey uses the current GSS ethnicity harmonised standard to collect information on the protected characteristic of race with the addition of a code of “Roma” and a free text “other” response option.
In the published reports, ethnicity is reported with categories of: White; Mixed; Asian; Black; Other; Not given.
Sex
Definition of protected characteristic: “A man or a woman.”
We have sought to use a proxy measure for sex based on the responses to the following questions:
The National Cancer Patient Experience Survey collects information on the protected characteristic of sex in the manner described above. For example, a response of “Male” to the first question and a response of “Yes” for the second, could suggest a self-reported sex of “Male”. We cannot infer sex data for those who select the options “Non-binary”, “Prefer to self-describe” or “Prefer not to say” to the first question, or for those that do not respond to either or both questions.
We are aware of limitations to both of these questions and they are currently under review by NHS England. We are also closely engaging with the GSS Harmonisation team review in this area.
In the published reports, we do not derive sex using these questions. We report answers to the two questions separately.
Sexual orientation
Definition of protected characteristic: “Whether a person’s sexual attraction is towards their own sex, the opposite sex or to both sexes.”
The National Cancer Patient Experience Survey uses the GSS harmonised standard to collect information on the protected characteristic of sexual orientation.
In the published reports, responses are presented for: Heterosexual or Straight; Gay or Lesbian; Bisexual; Other; Prefer not to say; Don’t know / not sure; Not given.
Do you collect the protected characteristics of marriage/civil partnership, pregnancy and maternity, and religion or belief?
We do not currently collect these protected characteristics, due to survey constraints and stakeholder priorities: