Patient voice — asthma¶
Last curated: 2026-08-30.
This directory records what living with asthma is like, what patients and carers say they need, and how patient organizations turn those needs into support and advocacy. It complements the clinical synthesis in ../../wiki/patient-experience-and-advocacy.md; it is not a substitute for treatment guidance.
Files¶
| File | Purpose |
|---|---|
organizations.md |
Live-verified patient organizations, geographic reach, services, and advocacy roles |
themes.md |
Cross-source synthesis; every promoted theme has at least two independent sources |
sources.md |
Annotated web and PubMed source register, methods, and coverage limits |
Method¶
- Published evidence: PubMed searches combined asthma with qualitative research, lived experience, self-management, adherence, stigma, school, work, pregnancy, severe disease, biologics, cost, health literacy, and digital communities. Every PMID in this layer was re-fetched through live PubMed E-utilities on 2026-08-30.
- Organizations: official organization pages were re-fetched live on 2026-08-30. An organization appears in the main register only where its own site described an asthma-specific patient service, story programme, advocacy programme, or research role.
- Synthesis: a patient-experience theme requires support from at least two independent sources. Organization surveys and story collections are useful signals, but are not treated as prevalence estimates unless their sampling and denominator are reported.
- Separation of evidence types: qualitative studies establish recurring experiences; surveys estimate frequency within their sampled populations; organization pages document current services and public priorities. None is silently substituted for another.
Ethics and privacy¶
- Publicly accessible material only; no closed groups, direct messages, comments, or logged-in community content was accessed.
- Experiences are paraphrased and synthesized in aggregate. Individual patient stories are not reproduced, linked across sites, or assembled into profiles.
- Names and identifying details of private individuals are omitted even when an organization publishes them.
- Public story hubs are cited to demonstrate the existence and range of testimony, not to infer population frequency.
- Severe attacks, death, pregnancy, and childhood experiences are handled as sensitive material; no story is used as medical advice.
Updating¶
Re-fetch organization pages before changing service descriptions. Add a qualitative paper only after live PMID verification, and promote a new theme only when a second independent source supports it. Propagate material changes to the wiki page and the condition log.