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Australian Sudden Cardiac Arrest Lived Experience (ASCALE) Registry Code of Conduct

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1. Preamble & Purpose

 

The ASCALE Registry is an ethically managed resource containing the personal stories of those touched by sudden cardiac arrest. This Code of Conduct is a binding agreement for member organisations and their representatives granted access to the Registry. Its purpose is to ensure that all contributors are treated with the dignity, respect, and sensitivity, protecting their well-being and the integrity of the Registry.

 

By accessing the Registry, the Member agrees to abide by all terms outlined in this Code. Breaches of this Code may result in sanctions.

 

2. Guiding Principles

 

All engagements with Registrants must be guided by the following principles:

• Compassion: Recognise the profound and often traumatic nature of a sudden cardiac arrest experience.

• Respect: Honour the Registrant’s story, time, and boundaries.

• Integrity: Be transparent, honest, and clear in all communications and intentions.

• Empowerment: Ensure the Registrant feels in control of their narrative and how it is used.

 

3. Ethical & Sensitive Engagement

 

The Member must:

• Prioritise Well-being: Be mindful of the potential for re-traumatisation. Conduct all interactions with empathy and patience, allowing the Registrant to share only what they are comfortable with.

• Adhere to Sensitivities: Strictly adhere to all sensitivities, triggers, and communication preferences noted by AuSCAA in the Registry and communicated directly by the Registrant.

• Provide Context: Clearly explain the specific purpose of the engagement (media interview, policy meeting, awareness campaign) to the Registrant before and during the interaction.

• Obtain Explicit Consent: For each new use of a story, image, or quote that extends beyond the initial agreed purpose, the Member must seek new, explicit permission from the Registrant and notify AuSCAA.

 

4. Copyright, Ownership, & Usage

 

The Member agrees that:

• Registrant Ownership: The personal story, lived experience, and any media assets (photos, videos) provided by the Registrant remain their intellectual property.

• Scope of Permission: The Member is granted a limited, non-exclusive, and revocable license to use the Registrant’s story and approved assets only for the specific purpose and duration agreed upon with the Registrant and AuSCAA.

• Attribution: Where appropriate and requested by the Registrant, the Member will provide accurate attribution for the use of their story and/or image.

• Prohibition on Transfer: The Member must not share, sell, license, or otherwise transfer the Registrant’s story or contact details to any third party without the express written consent of both the Registrant and AuSCAA.

5. Commercial & Endorsement Prohibition

The Registry is a resource for advocacy, awareness, and research. It is not a commercial lead generation tool.

• The Member must not use the Registry for direct marketing, sales, or the endorsement of specific commercial products or services.

• Any engagement that could be perceived as a commercial endorsement (participating in a campaign for a specific medical device company, drug company, hospital etc) requires explicit, separate, written consent from the individual Registrant and prior written approval from AuSCAA.

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6. Data Handling & Privacy

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The Member must:

• Secure Handling: Treat all information provided by AuSCAA and the Registrant as confidential and handle it in accordance with the Australian Privacy Principles (APPs).

• Data Minimisation: Only collect and use data that is absolutely necessary for the agreed-upon engagement.

• Data Deletion: Upon conclusion of the engagement, the Member must permanently delete the Registrant’s contact details from all systems and records unless explicit permission for future contact has been granted and this permission has been formally recorded in the Registry by AuSCAA.

• Data Retention Report: Upon request from AuSCAA, the Member must provide a written statement confirming the deletion of the Registrant’s personal data.

 

7. The Engagement Process

 

The Member agrees to follow the official access process as defined by AuSCAA:

1. Request: Submit a formal request using the form provided to AuSCAA outlining the purpose, scope, and ideal profile for the engagement.

2. Connection via AuSCAA: All initial contact with potential Registrants must be made by AuSCAA. The Member must not contact Registrants directly until a connection has been formally facilitated by AuSCAA.

3. Briefing: Upon connection, provide the Registrant with a clear brief for the engagement (interview questions, event details, campaign messaging).

4. Debrief: Participate in AuSCAA’s feedback process following the engagement to help maintain the quality and sensitivity of the Registry.

 

8. Complaints & Breach Process

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• Reporting: Any breaches of this Code, or complaints from Registrants, must be reported immediately to AuSCAA.

• Investigation: AuSCAA will investigate all reported breaches promptly and confidentially.

• Sanctions: Depending on the severity of the breach, sanctions may include:

  • A formal warning.

  • Consultation on ethical engagement.

  • Temporary suspension of Registry access.

  • Permanent revocation of access privileges for the individual and/or the entire member organisation.