Common questions

The study is not open for people to join yet. How people will be invited is still being decided [TBD]. If you would like to be told when it is ready, you can email us at care-pac-project@strath.ac.uk.

We will explain everything before you decide, and you will get a written information sheet. You can ask as many questions as you like. The exact steps after that, such as how you will be set up with the website, are still being planned [TBD].

Not everyone in the study will use the website. To find out fairly whether the website helps, some people will use it and others will carry on with their usual care, so we can compare. Chance decides which group you are in, not you, and not your care team. We will explain this fully before you decide [details TBD].

Yes. Carers are a key part of CARE-PAC. The tool is also for you, the carer. You can use it to ask for help, tell us what you need, and find information that fits your situation.

We have not decided this yet [TBD]. At the moment the study materials and this website are in English only.

That is fine. Your care will not change. You will still get the same care from your team as you do now.

No special computer is needed. The CARE-PAC website works on a phone, a touchscreen tablet such as an iPad, or a computer. If you do not have one, or if you find it hard to use, your carer or a member of your care team can help. Taking part should never feel difficult.

We are still working out the best plan with patients and carers. Most people would use it once a week. Some weeks might need a few extra answers. Each time should take only a few minutes.

Taking part should never feel difficult. Your carer or a member of your care team can help you use the website. The full plan for helping people get started is still being worked out with patients and carers [TBD].

We know not everyone has internet at home. What support we can offer with this is still being decided [TBD]. If this worries you, please email us at care-pac-project@strath.ac.uk, it is helpful for us to know.

That is okay. You can take a break, skip anything you would rather not answer, or stop at any time. No one will be upset with you. What happens after a missed check-in is still being decided [TBD].

We are building the website with patients and carers so it is easy to use. The exact features that will help, such as larger text, are still being decided [TBD]. Your carer or a member of your care team can also help you.

No, the website is not an emergency service. If you feel very unwell, contact your usual care team. In an emergency, call 999. The website helps your care team see how you are doing so they can step in sooner, but how quickly answers are reviewed is still being decided [TBD].

You will keep getting your usual care from your team. The website is designed to work alongside your usual care, not replace it.

Your care team will keep caring for you as they do now. You can take a break from the study, or stop completely, at any time, and your care will not change because of it.

Yes. The point of the tool is to help your team know how you are doing between visits. You decide what you tell them. They will not see anything you do not type in.

This is not a paid study, but we are grateful to everyone who takes part as we strive for better care options. If further support is needed, a study visit may be discussed and associated travel expenses covered. This will be discussed with you in more detail if necessary.

A study visit is a planned meeting with a member of the research team. It might happen at your home, at a clinic, or by phone or video call, whatever suits you best. The team member might help you set up the website, go through some questions with you, or ask how you are finding things. We will always arrange a time that works for you, and your carer is welcome to be there too.

Your care team will see your answers, that is how they know how you are doing between visits. Only the people who need to see your information will be able to. When we share what we learn from the study, we never share anything that could identify you. The full details will be in the written information sheet.

We follow strict UK rules to keep your information safe, and anything we share will never identify you. The detailed rules for what happens to your information after the study are still being written [TBD] and will be explained in the written information sheet.

We do not know yet [TBD]. If the study shows the website works, we hope it will become part of everyday care in the future.

We will write a plain-English summary of everything we find, together with our patient and carer group. How we will share the results with people who took part is still being decided [TBD].

Email us at care-pac-project@strath.ac.uk, or use the contact page. Remember: for anything about your health, contact your usual care team. In an emergency, call 999.