A research prospectus titled From Lived Experience to Research Questions, developed from The Silence Between Two Heartbeats, has been published with a permanent scholarly record on Zenodo (DOI: 10.5281/zenodo.22927886).
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The prospectus looks at how observations by parents and caregivers can point to questions worth formal scientific study.
Its main focus is brief, unexpected neurological events that happen outside the hospital after discharge, when objective neurological information may not be available at the moment of the event.
The prospectus does not present personal experience as medical evidence.
It offers lived experience as a starting point for questions that qualified clinicians, neuroscientists, and engineers can evaluate.
It stresses that any future monitoring technology would need rigorous validation and clinical oversight, and must never replace professional diagnosis or emergency care.