Scottish Cancer Patient Experience Survey: materials

Summary privacy notice

This is a summary of our full privacy notice. It gives you information about completing the Scottish Cancer Patient Experience Survey and about how we use the information you give us.

The survey asks about your experiences of cancer care.

If you need help filling in the survey, please phone the free helpline on 0800 783 1775. A family member, friend or support worker can help you complete the survey, but the answers must be your own.

Taking part in the survey is voluntary. You do not have to answer a question if you do not want to. You will be asked to skip questions that do not apply.

The Scottish Government, Public Health Scotland and Macmillan Cancer Support run the survey. IQVIA is a contracted research partner that collects feedback from people who’ve used healthcare services. IQVIA print, post and collect survey questionnaires on our behalf. None of the staff involved in your care will know whether you have filled in the survey.

Why the survey is needed

The survey results will help us to better understand people’s experience of cancer care. We use this information to improve cancer care by finding out what we are doing well and where we could do better.

Our legal reason for gathering and using personal data

We need to have a legal reason to store and use personal information if we do not ask you first.

We run this survey as a “public task in the public interest”.

This means that there is a public benefit to us using this information because we will use it to improve health and care services.

How we got your name and address

Public Health Scotland have information on who has been in hospital with cancer. Access to this information is very tightly controlled.

The Public Benefit and Privacy Panel for Health and Social Care decides who can access this information. This panel has allowed us to use this information to send this survey to you.

Who has access to information that identifies you

Only Public Health Scotland and IQVIA have access to your name and address.

IQVIA have only been given your name and address so that they can print and post the survey pack to you. They will delete this information once this work is finished.

Staff at the NHS Central Register and Public Health Scotland used some identifiable data to run checks to reduce the risk of sending a survey pack to someone who has recently died.

The people involved in your care will not know whether you took part in the survey.

How your survey responses are used

A small number of named people in Public Health Scotland, the Scottish Government, Macmillan Cancer Support and IQVIA will have access to your survey responses.

Public Health Scotland have information about you and your cancer care, for example from hospital records. They will link your survey responses to some of this information so that we can analyse your survey responses by things that might affect your care.

The information shared by Public Health Scotland with the Scottish Government differ from the information shared with Macmillan Cancer Support.

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

• sex
• age group
• how deprived the area you live in is
• how urban or rural the area you live in is
• Health and Social Care Partnership you live in
• NHS Board you were treated at
• NHS Board you live in
• hospital you were treated at
• Cancer Centre you were treated at
• type of cancer
• stage of cancer at diagnosis
• method of first detection of cancer

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

• sex
• age group
• how deprived the area you live in is
• how urban or rural the area you live in is
• NHS Board you were treated at
• NHS Board you live in
• type of cancer
• stage of cancer at diagnosis

Nobody from the Scottish Government nor from Macmillan Cancer Support will be able to identify you from the information provided to them.

Public Health Scotland and the Scottish Government will use the survey responses to publish a report on what the survey results are telling us.

We will make sure that no one can be identified from the results. We follow strict rules about this. The rules we follow are the Office for National Statistics Anonymisation and data confidentiality policy and PHS statistical disclosure control protocols.

You will be able to read the published results in Autumn 2024 on the Scottish Cancer Patient Experience Survey website.

Sometimes someone else, for example an academic researcher, may want to analyse the survey responses. They can only do this if the relevant NHS research, ethics and governance groups allow it.

Sometimes survey responses may be linked to other information to do other analyses. This can only be done if the relevant NHS research, ethics and governance groups allow it.

How your additional comments are used

At the end of the survey, you can add comments about your cancer care.

We will make comments anonymous by removing any details that might identify you or someone who cared for you. For example, we will remove staff names, details of any health problems you may have or any tests you have had.

We will share the anonymised comments with Macmillan Cancer Support and your Health Board so that they can use them to improve services.

We may share them with charities or academic researchers for further analysis. They will only be shared if the relevant NHS research, ethics and governance groups allow it.

How long your information is stored for

IQVIA will destroy names and addresses once the work to collect the data is done. They will destroy any paper copies of returned surveys after scanning them.

IQVIA will hold scanned copies of completed questionnaires for six months before destroying them.

IQVIA will store the survey responses for a period of six months.

The Scottish Government, Public Health Scotland and Macmillan Cancer Support will store the survey responses for as long as they need them. This is to allow analysis to be done if needed.

Public Health Scotland will keep a file that can be used to link the survey responses to other health information for as long as it is needed. This file will be stored separately from the survey responses. This file is needed to allow survey responses to be linked with other data for analysis. This would only be done if the relevant NHS research, ethics and governance groups allowed it.

Your rights

You have the right to:

• ask for a copy of the personal data we hold about you, we will not charge you for this
• ask that we correct any personal data we hold about you which is incorrect or out of date
• ask that we delete the personal data we hold about you
• withdraw consent to us using your personal data in the ways you’ve said we can
• ask that we send all the personal data we hold on you to another company or organisation
• ask us to stop using your personal data until you’re happy it is correct and being used in a way you are comfortable with
• object to the ways we use personal data
• complain to the Information Commissioners Office about the ways we gather or use personal data

To do any of the above, you can email us at: phs.dataprotection@phs.scot

Further information

If you do not wish to be contacted about this survey again, please call the free survey helpline on 0800 783 1775.

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