Patient voice — migraine¶
This directory holds the patient-experience evidence layer: public advocacy organizations, peer-reviewed qualitative and survey sources, and a cross-source thematic synthesis. It complements—not substitutes for—the clinical evidence in wiki/patient-experience-and-advocacy.md.
Files¶
| File | Purpose |
|---|---|
organizations.md |
Public organizations whose sites were live-checked on 2026-08-30 |
themes.md |
Themes supported by at least two independent sources |
sources.md |
Annotated research and public-source register |
Method¶
- PubMed searches covered lived experience, qualitative research, stigma, interictal burden, cognition, work, family impact, access, health-system barriers and treatment priorities.
- Every PMID in this layer was re-fetched through live PubMed E-utilities during the 2026-08-30 audit.
- Organization sites were opened directly; verification means the site and public role were confirmed, not that every clinical statement was endorsed.
- Themes are aggregate paraphrases. No private groups, logged-in content or identifying details of private individuals were used.
Ethical rules¶
- Use public material only.
- Paraphrase; do not harvest stories or assemble cross-source dossiers.
- Do not name private individuals.
- Require at least two independent sources before elevating an observation to a theme.
- Keep selection limits visible: online respondents and headache-clinic patients are not population samples.
Update protocol¶
Recheck organization URLs, retrieve new PMIDs live, record access dates, and propagate conclusion-changing evidence to the wiki page and condition log.