Scottish Cancer Patient Experience Survey: materials

Full privacy notice

Information from this survey is used to:

• provide a national and local picture of the quality of cancer care services through the eyes of those using them;
• compare the quality of cancer care services over time and between areas;
• identify areas of best practice and areas for improvement.

This survey is a means for Scottish Ministers to monitor how well they are fulfilling their duty, under Section 1 of the NHS (S) Act 1978, to continue to promote a comprehensive and integrated health service that is designed to secure:

1. improvement in the physical and mental health of the people of Scotland, and
2. the prevention, diagnosis and treatment of illness, and for that purpose to provide or secure the effective provision of services in accordance with the 1978 Act.

Lawful basis

We conduct this survey as a “public task in the public interest” under UK GDPR Article 6(1)(e) – 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. Our legal basis is that the use is necessary:

• for archiving, scientific or historical research, or statistical purposes – UK GDPR Article 9(j)
• for reasons of public interest in the area of public health - UK GDPR Article 9(i)
• for providing health or social care or treatment or managing health or social care systems and services - UK GDPR Article 9(h)

How we got your name and address

The SG applied to the Public Benefit and Privacy Panel for Health and Social Care (PBPP) seeking approval to use NHS data to identify people who have experienced cancer care. A copy of the approval letter from the PBPP (ref: 2223-0074) is available online with our survey material.

PHS selected names and addresses for people (aged 16 and over) who had cancer-related hospital activity between 1st October 2022 and 30th June 2023. Data from the Scottish Cancer Registry was used to quality assure the sample by confirming that those sampled are eligible for the survey.

PHS has made every effort to ensure that your name and address are accurate, but recognises that if you haven’t informed your GP that you have changed address or name or your new address or name has not yet been input into the national CHI system, then the communication may arrive at your most recent address using the most recent name held within the national CHI system. We sincerely apologise in advance.

Who has access to information that identifies you

Only specifically authorised personnel within PHS and IQVIA have access to the names and addresses of the individuals who are sent the survey pack.

IQVIA has only been given your name and address for the purpose of mailing you the survey pack and they are required by contract to destroy this information once this work has been completed. They do not have access to any other information about you.

Staff at the NHS Central Register (NHS CR) and PHS CHI Linkage and Indexing Service (CHILI) team process some identifiable data on our behalf by running checks to reduce the risk of sending a survey pack to someone who has died.  NHS CR and CHILI host the Community Health Index (CHI) database, that is a population register used in Scotland for health care purposes.

The health and care professionals involved in your treatment or care will not know whether or not you took part in the survey.

Only specifically authorised NHS analysts at PHS will retain a record of the identity of those who took part in the survey, and this will be stored separately from the survey responses.

All of the organisations involved in handling your name and address for the purpose of this survey adhere to the Information Sharing Toolkit Scotland. This brings together all of the statutory requirements, standards and best practice that apply to the handling of personal information, including requirements set out in Data Protection legislation. All transfers of personal or identifiable data are carried out securely.

How your survey responses are used

Access to your survey responses is very tightly controlled and is restricted to named individuals within PHS, the SG, Macmillan and IQVIA.

PHS analysts will link your survey responses to a set of agreed information so that we can analyse the responses by these factors. PHS analysts will not link your name and address to the survey responses.

The additional information that will be linked to your survey responses and shared with the Scottish Government are:

1. Sex - (M/F) – from Hospital Admission Records (also called SMR01)
2. Age group – (16-64, 65-74, 75+) – from GP registration records (also called CHI)
3. SIMD Quintile - derived from patient postcode on Hospital Admission Records (SMR01) at time of treatment
4. Urban/rural 6-fold classification - derived from patient postcode on Hospital Admission Records (SMR01) at time of treatment
5. Health and Social Care Partnership - derived from patient postcode on Hospital Admission Records (SMR01) at time of treatment
6. NHS Board of treatment – from Hospital Admission Records (SMR01)
7. NHS Board of residence at time of treatment – from Hospital Admission Records (SMR01)
8. Hospital of treatment – from Hospital Admission Records (SMR01)
9. Main cancer centre – derived from hospital of treatment and survey responses
10. Type of cancer - Grouped based on 3-digit International Classification of Diseases (ICD10) code – from Scottish Cancer Registry (also called SMR06)
11. Stage variable (stage I-IV) – from Scottish Cancer Registry (SMR06)
12. Method of first detection – from Scottish Cancer Registry (SMR06)

The survey responses will be analysed by specifically authorised PHS and SG analysts who will publish a national report and results broken down by Health Board and Cancer Centre in Autumn 2024. The survey results will be available on the Scottish Cancer Patient Experience Survey website.

PHS will also share the survey response dataset, but not anything that identifies individuals, with specifically authorised Macmillan analysts so they can carry out further analysis to help identify areas for improvement. No individuals will be identifiable in the survey dataset or in any published results.

The additional information that will be linked to your survey responses and shared with Macmillan analysts are:

1. Sex - (M/F) – from Hospital Admission Records (SMR01)
2. Age group – (16-64, 65-74, 75+) – from GP registration records (CHI)
3. SIMD Quintile - derived from patient postcode on Hospital Admission Records (SMR01) at time of treatment
4. Urban/rural 6-fold classification - derived from patient postcode on Hospital Admission Records (SMR01) at time of treatment
5. NHS Board of treatment – from Hospital Admission Records (SMR01)
6. NHS Board of residence at time of treatment – from Hospital Admission Records (SMR01)
7. Type of cancer - Grouped based on 3-digit International Classification of Diseases (ICD10) code - Scottish Cancer Registry (SMR06)
8. Stage variable (stage I-IV) – from Scottish Cancer Registry (SMR06)

The arrangements for protecting the confidentiality and privacy of individual information within the analysis are made in accordance with the Office for National Statistics Anonymisation and data confidentiality policy and PHS protocols.

The survey dataset, containing individual level survey responses but not including anything that identifies individuals, may be shared with a third party, such as an academic researcher, for the purpose of undertaking additional analysis. Before any data are shared, the third party must seek the necessary approvals from the relevant NHS research, ethics and governance groups and sign a Data Processing Agreement or Data Sharing Agreement with the Scottish Government and PHS.

Sometimes survey responses are linked to other data sources in order to undertake other analyses.  Linkage of survey responses can only be done by specifically authorised NHS analysts working at PHS and is only done once the necessary approvals have been granted by the relevant NHS research, ethics and governance groups. All personnel involved with this additional analysis are governed by the Information Sharing Toolkit.

How your additional comments are used

Additional comments made by respondents on the survey form are shared with Macmillan and relevant Health and Care services for service improvement. All comments are anonymised before they are shared or analysed to ensure your identity is protected.

This means that all personal details; all references to staff/patient/ward/unit names; and any other information which might allow an individual to be identified, such as specific diagnoses/tests/procedures will be removed.

 Anonymised additional comments from the survey will sometimes be shared with a third party, such as a charity or academic researcher, for the purpose of undertaking additional analysis. They will only be shared once appropriate approvals and governance are in place.

How long your information is stored for

All survey responses are stored securely and confidentially under the terms of Data Protection legislation.

IQVIA are required to destroy names and addresses once the survey work is complete. They will destroy hard copies of returned surveys once scanned copies are available and stored securely. Scanned copies of completed questionnaires will be held by IQVIA for six months then destroyed as there will no longer be a need for them.

The survey dataset, containing individual level survey responses but not including anything that identifies individuals, will be stored by IQVIA for a period of six months and by the SG, PHS and Macmillan for as long as processing is necessary. This is to allow additional analysis to be carried out as required, for example time trends or more detailed analysis of particular aspects of the survey responses. This retention will be reviewed regularly to ensure that it is still appropriate to hold the data.

A file containing personal identifiers and the respondents’ unique survey ID numbers will be stored by PHS for as long as processing is necessary. This file will be stored separately from the individual level survey responses. This file is retained to allow future data linkage with other data. This linkage would only be done where the necessary approvals have been granted by the relevant NHS research, ethics, and governance groups.

Your rights

Taking part in the survey is voluntary. Completing the survey gives you an opportunity to provide feedback on your cancer care experience. None of the health and care professionals involved in your care will know whether or not you have responded.

You don’t have to answer every question if you don’t want to, and you will be asked to skip questions that don’t apply.

If you do not wish to be contacted about this survey again, please call the survey helpline for free on 0800 783 1775 and request that you are not sent a reminder letter.

Data Protection legislation gives rights to individuals in respect of the personal data that organisations hold about them. These include:

• The right to be informed;
• The right of access;
• The right to rectification;
• The right to erasure;
• The right to restrict processing;
• The right to data portability;
• The right to object;
• Rights in relation to automated decision making and profiling.

The Information Commissioners Office provides more information on your rights under Data Protection legislation. 

Should you wish to contact the PHS data protection officer (DPO) in respect of your information rights, please read the main PHS Privacy Notice and email the PHS DPO at phs.dataprotection@phs.scot

If you have engaged with us and are still dissatisfied, you have the right to lodge a complaint with the Information Commissioners Office. 

You can read more information on privacy and confidentiality when using the NHS i this explains what you can do if you feel that your rights have not been respected.

How to contact us

Please contact us if you have any questions or concerns about our privacy policy or information we hold about you. You can contact us by emailing us at: patientexperience@gov.scot.

More information about the survey is available online on the Scottish Cancer Patient Experience Survey webpage.