For families

CAHS conducts research for the sole purpose of improving the care, health outcomes and experiences of the children and young people in our care.

Through our research we try to find new and better ways of preventing, diagnosing and treating illness and injury.

Embracing research makes us a better health service by helping us attract and retain the best medical teams and improving opportunities for our patients to access cutting-edge treatments and therapies here in Western Australia.

The involvement of children and families is vital to our research, helping ensure the results it produces meet the needs of the children and families for whom it is intended.

Through our consumer engagement process, children and families can also help inform how we do our research.

Below we answer some of the questions that families frequently ask about our research.

What is in it for my child?

While some children may gain improvements from interventions offered through research, there is no guarantee they will benefit from participating in a particular study.

The insights gained from their participation, however, will advance future care.

It is worth noting that our researchers are generally clinicians with expertise in their respective fields who are abreast of the latest developments in their fields and highly motivated to improve outcomes for their patients. So just being involved in research can expose you to information and ideas that may help you manage or improve your child’s condition.

Your child should also know that by participating in research they are helping others and making an extremely valuable contribution to the community.

What is involved?

Research projects can take many forms, so your involvement in a project would depend on the project itself.

Some projects require minimal time and input. They could involve completing a series of short online surveys or consenting to a tissue sample or medical record being analysed.

Others might require greater commitment and include the attendance of you and your child in-person. These could be longer-term studies such as those trialling a new therapy or device, or even a lifestyle intervention such as a nutrition or exercise plan.

Regardless of the project, all prospective participants are given clear and detailed information about what participation will involve. This is to enable you and your child to make an informed decision about whether to participate.

Is it safe to be involved?

Before any project can proceed, it must have approval from an ethics committee whose role is to ensure that it is conducted safely and ethically, that it is culturally appropriate and meets all legal requirements and national standards.

Will my child’s data and medical records by kept confidential?

Yes, we understand the importance of protecting your child’s medical information. As part of the research approval process, all researchers must demonstrate how they will protect the privacy and confidentiality of patient information. Study information given to you prior to consenting to participate, should detail measures being taken to protect participants’ information.

What happens if I am asked to be involved?

Researchers may contact you if they think you are suitable for a study. If you are interested, they will provide you with information about the project and what participation would entail. You will be able to talk to your doctor, healthcare team or the researcher and ask any questions that you may have before you make any decision. You should always include your child in decisions about participating in research.

Does my child have to participate in research?

No, your child does not have to participate in research. Participation is voluntary, and your decision will not affect the care your child receives from us.

Will I be compensated for my time or any costs I could incur, such as parking?

While payment for your participation is not standard, many studies do offer compensation or reimbursement for time or expenses incurred such as meals or parking. You will normally be advised of any such arrangements prior to consenting to participate. Check with the study coordinator if you require clarification.

How can I participate in research at CAHS?

We welcome all families to be part of the life-changing research taking place across our health service, some of it conducted in collaboration with our research partners such as The Kids Research Institute Australia.

Many of our studies need children or families who meet specific research criteria (for example they may require children with a particular medical condition). You will likely receive an invitation to participate if your child meets the criteria for one of these projects.

But there are also many projects that require healthy children too.

If you are interested in participating in a research project, please discuss it with your child’s doctor.

What should I do if I want to make a complaint or raise concerns about a research project?

You should email the Manager Research Ethics and Governance, detailing all relevant information. The manager will contact you to discuss your concerns. You may wish to include a phone contact in your email.