Rheumatoid arthritis patient-voice layer¶
Last curated: 2026-08-30.
Purpose¶
This layer complements clinical evidence with public, ethically handled evidence about living with RA: diagnosis, pain, fatigue, work, relationships, treatment burden, self-management, access and advocacy.
Method¶
- Use public patient-organization pages and PubMed-indexed patient-reported/qualitative evidence.
- Retrieve every organization page during the build and record URL plus access date.
- Paraphrase themes in aggregate; quotations are unnecessary here and none exceed the repository’s 15-word limit.
- Require at least two independent sources for each theme.
- Keep service claims separate from prevalence claims.
- State geographic, digital-access and selection limitations.
Ethics¶
- No private forums, closed groups or private messages were accessed.
- No names or identifying details of private individuals are recorded.
- Public stories are not treated as representative samples.
- Organizations are described by verified services, not endorsed.
- This is research synthesis, not medical advice or crisis support.
Files¶
- organizations.md — verified public organizations.
- themes.md — cross-source thematic synthesis.
- sources.md — annotated sources and coverage limits.