Scotland's Cancer Strategy Evaluation: Experiences of patient access and engagement with cancer treatment and support in rural and island areas, and in areas with higher deprivation

Appendix C – Text from patient information sheet

About the Cancer Strategy for Scotland Evaluation

The Scottish Government has asked Ipsos Scotland (an independent research organisation) to speak to people about their experiences of accessing cancer treatment and support services. Dr Naomi White (University of Edinburgh) will also be providing advice on the evaluation.

The Scottish Government wants to understand what is working well and what could be improved, particularly for two groups of people: people living in rural/island areas of Scotland; and people living in areas where there may be more people on low incomes and fewer resources or opportunities. This will help them think about how to deliver services in future.

Why have I been invited to take part?

We (the team at Ipsos) will be speaking to people in six areas across Scotland. You’ve been invited to take part in the evaluation because you have been referred for cancer treatment or support in one of these areas. We’ll also be speaking to some healthcare staff who are involved in cancer treatment or support. We hope you might be able to share your views and experiences to help us with this evaluation. This leaflet explains what would be involved.

What does taking part involve?

• Taking part involves a conversation with a researcher from Ipsos. It will last up to an hour and take place at a convenient time for you. The conversation can be by phone or video call, depending on your preference, or in-person if you are able to take part while the researcher is visiting your area.
• The researcher will ask you about your experiences of accessing cancer treatment and support, including what worked well, any challenges you faced, any support you received, and what could be improved.
• The interview will be relaxed and informal and you don’t need to prepare for it. There are no right or wrong answers, we just want to understand your views and experiences.
• You will receive £35 in Amazon or Love2Shop vouchers as a thank you for taking part.
• At the end of the interview, we may also ask you if you would like to take part in a follow-up interview to discuss whether your experiences of accessing treatment and support services change over time.

How will my information be used?

If you agree, the Ipsos interviewer will audio-record the conversation, so they can refer back to what you said. If you prefer not to be recorded, that’s fine though – they will just take notes. The recording will be securely stored in a folder only accessible to the team at Ipsos. Ipsos may use their secure AI assistant to transcribe the recording.

Your contact details will not be shared outside of the evaluation team at Ipsos. The only exception to this would be if we believe that you, or somebody else, is at risk of serious harm, in which case we may need to share this with someone else so that help can be provided.

Ipsos will write a report of the findings for the Scottish Government. The report will be published and may include (anonymous) quotes from your interview or anonymised descriptions of your experiences. However, we will not include names and will take care not to include any other details that might identify you individually. If you do not want us to quote what you say, you can just let us know during or after your interview (up to when the report has been submitted).

Do I have to take part?

No. It is entirely your choice whether or not you take part. You can also change your mind at any time without giving us a reason. We recognise that talking about cancer can be sensitive and emotional - you can choose not to answer individual questions if you don’t feel comfortable with them, and/or stop the discussion completely at any time. Ipsos will always respect such decisions. Taking part, or not taking part, in this interview will not affect any services or support you receive.

How will we handle your personal data?

Please read the accompanying privacy notice for this project - https://assets-uk.ipsos.com/scotland/cancerstrategy/privacy.pdf. This tells you more about how Ipsos securely handles your personal data.

What next?

If you have any questions about the interview you have arranged, please get in touch with Ipsos:

• Email: [redacted]
• Call or message [Senior Researcher at Ipsos] on: [redacted]

Please let us know if there is anything that would make it easier for you to take part. We will discuss your needs with you and try to make it as easy as possible for you to take part.

Sources of support

We know that taking part in evaluations like this can sometimes raise issues people want further help with. Here are some sources of support that might be helpful.

Citizens Advice Scotland

Citizens Advice Scotland provide free, independent, confidential and impartial advice to people in Scotland.

Visit their website at https://www.cas.org.uk/ for information or to find your nearest Citizens Advice Bureau.

Children 1st Parentline

Children 1st is Scotland’s National Children’s Charity. They run a free parentline for advice and support on 08000 28 22 33.

Their website can be found at https://www.children1st.org.uk/help-for-families/parentline-scotland/

Macmillan Cancer Support

Macmillan Cancer Support provide emotional, practical, physical and financial support for people living with cancer.

Visit their website at https://www.macmillan.org.uk for information.

Maggie’s Centres

Maggie’s provide practical, emotional and social support to people with cancer and their family and friends. The centres have staff on hand to offer support.

You can visit their website here: https://www.maggies.org/