Have you participated in a clinical trial that used linked data, either as a consumer or a trial participant?

If so, we’d love to hear from you. We're interested in your honest views—positive, negative, or anything in between—about your experience of taking part in a trial that involved linked data.

Your perspective is important and will help shape future research and improve how linked data is used in clinical trials.

If you are interested, sign up and we will get in touch with you.

What Is Linked Data?

Linked data means combining information from different sources — like hospital records, Medicare data, or prescription histories — to get a more complete picture of a person’s health journey.

For example the consent form that you signed may have contained explanatory language like:

“agree to having your data accessed via data linkage (bringing together information from different sources such as registries, hospitals etc)”

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How Is It Used in Clinical Trials?

In clinical trials, researchers can use linked data to:

• Track health outcomes over time without needing participants to come in for extra appointments.
• See how people use health services before and after a treatment.
• Follow up with participants long after the trial ends, even years later.
• Include people from rural or remote areas who might not be able to travel to trial sites.

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Is Participant Privacy Protected?

Yes. Linked data is de-identified, which means participant’s name and personal details are removed. Researchers only see the information they need, and strict rules are in place to protect privacy.

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Why Is This Important?

Using linked data helps make trials:

• More efficient (less paperwork and fewer visits)
• More inclusive (especially for people in rural or remote areas)
• More accurate (real-world data gives a fuller picture)