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MASLD — patient-voice layer: method and ethics

This layer records what people living with MASLD say about it, drawn from public sources, alongside a directory of patient organisations and an annotated source list. It exists because the clinical literature describes this disease as asymptomatic and silent, and the interview literature does not.

Contents

File What it holds
organizations.md Patient organisations and public health portals, each verified by direct retrieval, with URL and access date
themes.md Thematic synthesis of patient-reported experience, each theme supported by at least two independent sources
sources.md Annotated source list — peer-reviewed qualitative and survey studies plus non-journal material — with an honest coverage-limits note

The synthesis that appears in the wiki is wiki/patient-experience-and-advocacy.md; this layer is the underlying material.

Ethics rules, binding on every file here

These follow CONVENTIONS.md §3 and are not negotiable.

  1. Public sources only. Organisation websites, government health portals, published peer-reviewed studies, and public-facing videos or campaign material. Nothing from closed forums, private groups or personal correspondence.
  2. Paraphrase rather than quote. Where a quotation is genuinely necessary, it is ≤15 words and attributed to the publishing source, not to the individual.
  3. No names or identifying details of private individuals. Public figures and named organisational spokespeople are the only exceptions, and they are identified by their public role. Where an organisation publishes a personal story, this layer records the theme, never the person: not their name, occupation, location, age, family situation or any combination that would identify them.
  4. Themes are reported in aggregate. A theme requires at least two independent sources. A single account is an anecdote and is not entered as a theme.
  5. Retrieval is verified, not assumed. Every non-journal source carries the URL and the date it was actually fetched. Transient failures are retried and current official domains checked; a source is marked unverified only if those steps still fail.
  6. No medical advice. Nothing here tells anyone what to do. Patient-reported preferences and experiences are recorded as research knowledge about the condition.

Method, 2026-09-02

  1. Peer-reviewed qualitative and survey literature. Two PubMed searches. The first — (NAFLD OR MASLD OR NASH OR "fatty liver") AND (stigma OR "quality of life" OR "patient-reported outcomes" OR qualitative) AND (patients OR interview OR survey) — returned 1,168 records dominated by instrument and survey work, and gave a false impression that no interview-based literature existed. A targeted re-run — (NAFLD OR MASLD OR NASH OR "fatty liver") AND ("qualitative study" OR "semi-structured interview" OR "focus group" OR "lived experience" OR "illness perception") — returned 133 records and surfaced the interview studies that anchor themes.md. The failure is recorded because it is the exact error the repository's absence rule is meant to catch: an absence found under one search formulation is not an absence.
  2. Organisations. Candidate organisations were retrieved directly by HTTP with a browser user-agent. The independent audit repeated transient failures and checked current official domains: American Liver Foundation and Global Liver Institute then returned HTTP 200, British Liver Trust redirected to Liver UK, and ELPA resolved at https://elpa.eu/ rather than its former domain.
  3. Non-journal content. Where an organisation page carried patient-experience content (for example a published video transcript), the material was read and the themes extracted; no identifying detail was carried across.

What this layer deliberately does not do

  • It does not aggregate social-media content, patient forums or review sites. Those are public in a technical sense and not in a consent sense.
  • It does not attempt to estimate how common a theme is in the population. Interview samples here range from 16 to 222 people and are not representative.
  • It does not treat organisation material as evidence of fact. Where an organisation states a statistic, it is recorded as that organisation's public claim, and the corresponding peer-reviewed figure is in statistics/STATISTICS.md.

Maintenance

Re-verify every organisation URL at each sweep; sites move and reorganise, and three major organisations were unreachable to automated retrieval on 2026-09-02 and should be re-attempted. Re-run both PubMed searches, since the qualitative literature in this condition is small enough that a handful of new studies would change the themes materially.