People and professionals invited to evaluate toolkit for healthcare staff supporting people affected by cancer

Your feedback will shape an updated version of the toolkit.

Researchers at the University of Strathclyde are doing a study to improve guidance for healthcare staff. The guidance, called the Scottish Cancer PROMs toolkit, aims to help healthcare teams best ask people affected by cancer how their treatments has effected their quality of life. This can be measured through ‘Patient Reported Outcomes Measures’, or PROMS. Researchers want to know what should be in the next version of the toolkit.

What are PROMS?

PROMs are ways for patients to tell their healthcare team how their health condition and its treatment affect them. PROMs can ask about symptoms, side effects of treatment and how someone feels day to day. PROMs are filled out by patients themselves. This might be on paper or using an app or a website. Research shows that PROMs can help patients and healthcare teams make decisions about their care together.

What is the study about?

 Lots of people, including those affected by cancer, helped to design the Toolkit. It was first launched in October 2024. You can read the Toolkit here (https://learn.nes.nhs.scot/78153). Now that the Toolkit has been available for over a year, researchers want to understand how it has been used and how it could be improved. This will help them to refresh the Toolkit and relaunch it in 2027.

For people affected by cancer who want to take part, here’s what to know:

You can take part if you have had cancer, or you have cared for someone who has had cancer. You can take part if you live in NHS Scotland. You do not need to know anything about PROMs or the Toolkit to take part.

How can I take part? You can take part in one or two of these ways- as many or as few as you like:

Option 1: An online questionnaire

• The questionnaire is available by clicking this link or copying and pasting it into your internet browser: https://strathsci.qualtrics.com/jfe/form/SV_eS9prDzrwv6kF2m
• The first pages fully explain the study. You will be asked to give consent before starting.

Option 2: A one-to-one interview, or a group discussion (called a “focus group”) with other people affected by cancer.

• These will take place online by video call.
  • If you fill out the questionnaire, at the end of it you can tick an option to choose to also take part in either an interview or a focus group. 
  • If you don’t want to do the questionnaire but want an interview or a focus group, please email: amanda.vettini@strath.ac.uk
• The full information sheet for interviews and focus groups will be emailed to you. You can then decide whether you want to do an interview or a focus group.   

If you want to take part, please fill out the questionnaire and/or email us about taking part in an interview or focus group by 31 October 2026. You do not have to take part in this study. Saying no, or changing your mind, will not affect your care in any way. You may be sent a reminder email before the end of October.

Who can I ask questions to? The lead researcher for this work is Emma Dunlop, who is also the Co-Chair of the Scottish Cancer PROMs Advisory Group (the people responsible for the Toolkit). You can contact her at emma.dunlop@strath.ac.uk .

For professionals who want to take part, here’s what to know:

The Toolkit is aimed mostly at people who aim to collect and use PROMs data or are already doing so with people living with cancer as part of their routine healthcare in Scotland. This main audience are healthcare professionals, but also includes digital companies and pharmaceutical industry. However, multiple stakeholder groups, including patients, the public, third sector, government and other professional groups had an important role to play in developing the Toolkit and deciding what was important to be in it.

Any professional based in Scotland who has an interest in cancer PROMs (including, but not exclusive to cancer) can take part.

• You do not need to have collected or used PROMs data to be eligible to take part.
• You do not need know anything about, or have ever used, the Toolkit either.  

Eligible professionals (e.g. healthcare professional, Scottish Government, digital health, third sector etc.), are initially invited to complete an evaluation questionnaire by clicking this link:  https://strathsci.qualtrics.com/jfe/form/SV_5vaYL8dqlVjIjm6The first page contains the Participant Information Sheet for the questionnaire, which is followed by the consent form. After that, the questionnaire begins.

Eligible professionals are also welcome to take part in an interview or a focus group, either by opting in to either of those at the end of the questionnaire, or by emailing researcher Amanda Vettini at amanda.vettini@strath.ac.uk (CCd in). The lead for this work is the Co-Chair of the Scottish Cancer Patient Reported Outcome Measures Advisory Group (SC PROMs AG), Emma Dunlop (emma.dunlop@strath.ac.uk).

This evaluation will run until 31^st October 2026.

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