Patient voice — method and ethics

Last curated: 2026-09-02.

Purpose

This layer records what people living with CKD report matters, where they seek support, and which burdens conventional clinical endpoints miss. It complements rather than replaces trial evidence.

Inclusion method

Source type	Inclusion rule	Use
Peer-reviewed qualitative or mixed-methods study	PMID retrieved live in this session	Theme formation and contrasts across stage
Core-outcome consensus with patient participants	PMID retrieved live	Research-priority and outcome-method evidence
Patient-organization page	Public page fetched or search-verified on 2026-09-02	Service and advocacy mapping
Public campaign page	Organization-authored, public, dated where possible	Advocacy priorities
Private forum or closed group	Excluded	No scraping or identification

Ethics rules applied

• Public sources only.
• Findings are paraphrased and aggregated; no private individual is named or described.
• No quote exceeds 15 words; this layer currently uses no direct patient quotation.
• A public story page is evidence of that account, not prevalence.
• Organization claims about their own services are recorded as service descriptions, not independently proven outcomes.
• Sensitive details are not copied even when publicly visible.
• Geographic, language, stage, age and internet-access gaps are stated explicitly.

Workflow

1. Resolve peer-reviewed records live in PubMed.
2. Fetch organization pages and record access date.
3. Code themes only when supported by at least two sources.
4. Preserve contradictions across non-dialysis CKD, dialysis, transplant and conservative care.
5. Separate patient priority from intervention efficacy.
6. Re-check links and update coverage limits during each literature sweep.

Files

• organizations.md — verified support and advocacy organizations.
• themes.md — aggregate thematic synthesis with at least two sources per theme.
• sources.md — annotated evidence inventory and coverage limits.