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.

Background to the survey

The purpose of collecting and analysing data via this survey is to:

  • Secure continuous improvement by building on the results of previous surveys and enable local providers and Cancer Alliances to assess their performance improvement with other providers.
  • Enable commissioners to assess local improvements in cancer patient experience.
  • Provide NHS England with an up-to-date overview of cancer patient experience across England.
  • Enable patients to make informed choices about where to go for cancer treatment.
  • Provide NHS England with an up-to-date overview of cancer patient experience variation across England.

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:

  • NHS trusts will receive a report on their cancer patients’ experience. This includes trend data and results broken down by different sub-groups such as age, ethnicity, and tumour group.
  • NHS trusts will be able to benchmark cancer services within the trust and nationally.
  • NHS trusts will receive a free-text report providing automated semantic and sentiment analysis of written comments received as part of the survey.
  • The results will help NHS trusts to meet the requirement to measure patient experience as set out in the Peer Review Measures for Cancer.
  • The results could help NHS trusts to populate the Quality Accounts.
  • The results will help inform the commissioning of local services.

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 role of participating organisations

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:

  • Attend one of the sampling webinars being held in August.
  • Display survey fair processing notice during the sample period
  • Confirm the expected date of submitting your patient list when prompted by Picker.
  • Encourage NHS trust cancer leads to support this survey.
  • Ensure the patient list is submitted within plenty of time to be approved by the start of fieldwork.
  • Ensure the Information Systems teams respond to data queries from Picker within two days.
  • Raise awareness of the survey locally to help increase and maintain survey responses.
  • Commit to using the survey results to drive further improvement.

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.

Confidentiality and data protection

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.

Help to understand the survey results

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.