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This page was written from verified sources but has not yet passed the independent citation audit. Treat its claims as provisional.

Patient voice: method and ethics¶

Method¶

This layer triangulates peer-reviewed qualitative syntheses, public lived-experience scholarship, and public pages of established patient/carer organizations. It does not scrape private forums or treat highly visible accounts as representative. Themes require at least two sources of different type where possible.

Ethics rules applied¶

Public sources only.
Paraphrase rather than quote; no quote in this layer exceeds 15 words.
No names or identifying details of private individuals.
Themes are aggregate and do not imply prevalence.
Lived experience is plural; disagreement is retained.
Organization listing is descriptive, not endorsement or verification of clinical quality.
Crisis and treatment decisions are outside this literature layer.

Coverage limits¶

The peer-reviewed qualitative synthesis available here drew mostly on female samples and studies published through 2005, and its authors rated most included studies B-grade on the Critical Appraisal Skills Programme (Espíndola 2009, PMID 19225241). English-language web searching privileges UK, US and Australian organizations. As of September 2026 no qualitative meta-synthesis of the experience of anorexia nervosa published after 2009 was located in this audit, so the thematic core of this layer rests on a two-decade-old evidence base — the most important limitation on this page. Men, gender-diverse people, racialized groups, older adults, people in low-resource settings and those who do not identify with recovery narratives remain underrepresented.

Files¶

organizations.md — verified public organizations and services.
themes.md — aggregate themes with at least two sources.
sources.md — annotated source record and limitations.