Document One

“From Lived Experience to Research Questions: A Medical Humanities Prospectus Inspired by The Silence Between Two Heartbeats”

Author: A T M Haidar Khan. DOI: 10.5281/zenodo.22927886. This is a medical-humanities concept paper, not a clinical study. It reads Part I of the memoir (Chapters One through Sixteen) as a source of questions worth researching, and it leaves out Part II, an allegorical fairytale section, “by design.” The prospectus is direct about its own limits. It treats the manuscript as a record of what a caregiver observed and as a prompt for questions that clinicians and scientists can test. It never treats it as clinical documentation, never as proof that any event was medically what the narrator believed it was, and never as a judgment on any clinician’s or institution’s care.

Method: the prospectus runs a rapid scoping review with a single reviewer, using the Population–Concept–Context (PCC) framework that’s standard in scoping reviews. It searched PubMed-indexed literature, ILAE position papers, trial registries, and device regulatory information in September 2026. The prospectus itself describes this as “a rapid, single-reviewer scoping pass, not a PRISMA-ScR review.” That’s enough to frame a question, not to settle one, and the paper proposes a registered, two-reviewer scoping review as the first step in any future collaboration with an institution.

Content: one main research question drawn from the index case in Chapter Nine, plus ten more questions tied to other chapters (Sections 5.1–5.10). Each one follows the same structure: what the manuscript observes, why it might matter clinically, what’s known, what isn’t, a proposed research question, and the kind of expert validation the question would need before going further.

Keywords: narrative medicine; neonatal encephalopathy; post-discharge care; home EEG; caregiver observation; parental mental health; research agenda-setting.

Citation note: the full bibliographic details and reference list for this document are in the source PDF and aren’t reproduced in full here.

Document Two

“Beyond the NICU” (Perspective / Research-Agenda Article)

Author: A T M Haidar Khan. This is a Perspective-style article that lays out a step-by-step research agenda aimed at the same question as Document One. It’s written for a clinical or public-health audience rather than general readers. As of this issue it hasn’t been peer reviewed or published in a journal; we present it as the author’s proposed framework, pending any future submission and review.

In brief, it covers: why the question matters; where it came from; what “home EEG” means in practice today and where that falls short of the question; what the literature has already established; the specific gap; a proposed research agenda in several stages (starting with an observational study, not a device trial); what a first study could look like in concrete terms; safety, ethics, and fairness; and what a meaningful negative result would look like, so the agenda doesn’t quietly assume its own conclusion.

Citation note: the full reference list for this article (cited in this issue as “Beyond the NICU”) is in the source document.

Why we’re drawing on these two documents

Both documents were written by this magazine’s founding editor as scoping and agenda-setting work, not as clinical findings, and both say so themselves. We’re publishing summaries and excerpts here for the same reason we’d publish a concept paper from an invited researcher: they name a real, current gap in the literature precisely, and they do the work of citing what is and isn’t known instead of jumping to a conclusion. Please read both as a starting point for future research, not as its results. This is also, openly, a conflict-of-interest disclosure. Our Ethics & Conflicts of Interest Policy explains how we handle content written by our own editor.