Priority-setting in youth with chronic conditions

Researchers: Amy Finlay-Jones, Julie Dart, Ashleigh Lin, Keely Bebbington, Liz Davis, Leanne Fried, Raghu Lingam, Anne McKenzie, Elmie van Rensen, Rebecca Sampson

Project overview: Online survey and workshops to determine top unanswered research questions among youth with chronic conditions, their parents and clinicians

Who to contact for more information: For more information please contact Amy Finlay-Jones on 6319 1808 or email amy.finlay-jones@telethonkids.org.au

Plain Summary: In this project we want to find out which questions are most important in child chronic illness research.  We want to know which research questions young people with chronic illness think are important. We will also look at which questions are important to their parents and healthcare workers. A group of young people, parents, and healthcare works will guide each stage of the project.

There are many reasons why it is important for patients, families, and healthcare workers to have their say in research. Chronic illness affects many areas of a young person’s life. Often, young people and researchers have different views about what is important. This research will look at where the gaps in research are and help to make research more relevant.

When young people help to design research, they are more likely to be involved at all other stages of the research. Partnerships between consumers, healthcare workers, and researchers leads to increased understanding between these groups and leads to greater research impact. These impacts include increased uptake of research in practice and policy, greater healthcare innovations, and more patient-centred care.

Funder: Perth Children’s Hospital  Foundation