For patients and carers

Information for patients and carers

This page is written for people who are very ill, and the people who look after them. It explains what CARE-PAC is, what we are asking, and what to expect.

Plain English summary

CARE-PAC is a research project. We are building an app and support service for people who are very ill, and for the people who look after them. We want to find out if it helps with symptoms, with talking to your care team, and with feeling supported. Taking part is your choice. You can stop at any time.

Who is this for?

CARE-PAC is for people who are living with a serious illness that is not expected to get better. This includes some people with cancer, some people with long-term lung, heart, or kidney problems, and some people who are nearing the end of life for other reasons.

It is also for the people who care for them at home — partners, family members, friends, and other informal carers. Carers are part of the project from the start.

What is the study?

We are making a digital tool that helps you tell your care team how you are feeling. It lets the team see when something is getting worse, so they can help sooner. It also gives you and your carer information and support, in a place that is easy to find.

The tool is being built with patients, carers, and clinicians together. Once it is ready, we will run a study to see if it works as we hope. Around 200 people will take part across different parts of the UK.

What does taking part involve?

If you choose to take part, you might be asked to:

tell us how you are feeling each week, using a phone, tablet, or computer
let your care team see your answers
answer some longer questions a few times during the study
share your views on what is helpful and what is not

We will explain everything before you decide. You will get a written information sheet. You can ask as many questions as you like. You will only take part if you say yes.

What if I change my mind?

You can stop at any time. You do not need to give a reason. Your care will not change because of your decision. This is true at every point in the study.

Will my information be kept private?

Yes. We follow strict UK rules to keep your information safe. 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.

How do I find out more?

We are still in the early part of the study. The full information for people who can take part is being written now, with help from our patient and carer panel. If you would like to be told when it is ready, you can email us at hello@carepac.example.

Common questions

Will I have to use a computer?

No special computer is needed. The CARE-PAC tool works on a phone, a tablet, 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.

How often will I need to use it?

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.

Will my care team see my answers?

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.

Can my carer take part too?

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.

Will I get paid?

You will not be paid to take part. We may be able to cover travel costs if you come to a study visit. We will explain this clearly before you decide.

What if I do not want to take part?

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