For Patients/Caregivers

What can I contribute to research?

Many health care professionals and researchers are experts in treatments and systems but don’t know what it is like to live with or care for a person with chronic kidney disease. You have knowledge and insight from being a patient or carer that researchers don’t. The knowledge you have from lived experience of CKD can shed new light on what questions need to be answered and how to answer them.

How can I contribute?

Work with researchers to identify topics for research.
Make sure research methods are appropriate for patients.
Advise on suitable methods of data collection.
Interpret data from a patient or caregiver perspective.
Provide feedback on information written for the public
Help share the results of research projects.

We can talk about roles in more detail as we go through the life cycle of a typical research project. At each stage we will describe the type of activities you might be interested in as a patient or carer.

What will I be asked to do?

It all depends on how much you would like to contribute! We understand that illness and other commitments take up time and energy. You can do as much or as little as you like, change your mind about taking part and you can always say ‘no!’ if what’s being asked of you feels too much. Some things you may be asked to do are:

Attend meetings or workshops.
Join an advisory group or steering committee.
Provide feedback on research ideas or study designs.
Spread the word about recent research findings.
Join a research team.
Read and/or help write documents.

Most communication in the present time is either via Zoom, over the phone or, occasionally, in person. Meetings can be very flexible and will accommodate your needs as much as possible.

Why get involved in research?

Patients and Care givers may get involved for a variety of personal and social reasons: