FAQs – Opt Out and Refuse Follow-Up Processes

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Q: What does opting out mean?

A: See the Opt Out Process page for information on the opt-out model used by the Australian Stroke Clinical Registry (AuSCR), and how patients can opt out of the Registry or decline to be involved in follow-up.

Patients who opt out of the AuSCR have their episode details entered into the Registry before they are opted out, to maintain accuracy of case ascertainment, and to calculate opt-out rates.  On opt-out, their personal (identifying) details are removed from the Registry completely, and the record cannot be re-identified later.  The AuSCR has received Ethics approval to retain anonymous clinical information, so that your hospital can continue to evaluate and improve the stroke care it provides, while the privacy of patients who opt out of the AuSCR is protected.

Q: How do I record a patient opt out?

A: All patients must be provided with a Patient Information Sheet explaining their inclusion in the AuSCR, either during admission (preferably explained to them in person) or posted with a post-discharge contact letter.  They can then choose to opt out of the AuSCR or refuse follow-up, either verbally or in writing to hospital staff during their admission, or by post, email or phone to the AuSCR Office after discharge.

Hospitals need to develop systems to document the provision/explanation of the Patient Information Sheet during admission or after discharge.  Any patient opt outs should be recorded on the patient’s Medical Record, so their details are not inadvertently entered into the AuSCR at a later stage.

Q: What happens if we are notified that a patient has died after they were discharged?

A: It is helpful to record any patient deaths you have heard about on the AuSCR as soon as possible, to avoid unnecessary follow-up and potential distress to families.

From the “Patient record view”, select “Record death for patient” under the Actions button.  For further information, see the Hospital User Manual.  Alternatively, you can let the AuSCR Office know by email, and we will update the record for you.

Q: What is Refuse Follow-up and how do we record it?

A: Patients may not wish to be sent the follow-up questionnaire three months after their admission.  If a patients notifies you of this, from the “Patient record view”, select “Refuse follow-up” under the Actions button, or email the AuSCR Office.  Also record the refuse follow-up on the patient’s Medical Record for future reference.