Patient-voice layer — method and ethics

Last curated: 2026-08-30

Purpose

This layer records recurrent experiences of people living with angina, recovering from myocardial infarction or revascularization, or seeking recognition for INOCA. It complements clinical outcomes; it does not treat public narratives as prevalence estimates.

Method

1. Search peer-reviewed qualitative and patient-reported-outcome literature through PubMed.
2. Fetch official public pages from patient organizations and record URL plus access date.
3. Code themes only when supported by at least two independent sources or source types.
4. Prefer aggregate synthesis; do not reproduce identifying details.
5. Separate an organization's stated mission/resources from evidence that an intervention improves outcomes.

Ethics controls

• Public sources only.
• Paraphrase; no patient quote in this layer exceeds 15 words.
• No names or identifying details of private individuals.
• Organization spokespeople and public figures are not catalogued unless necessary to understand a campaign.
• Patient stories are not used to infer frequency or causality.
• Distress, diagnostic invalidation, and treatment harms are reported without sensational language.
• Emergency information links are organizational resources, not individual medical advice.

Coverage limits

English-language sources dominate. US, UK, Canada, Australia, South Africa, and global umbrella organizations are represented; Latin American, Middle Eastern, South/East Asian, Indigenous-language, rural, and low-income patient voices remain underrepresented. Publicly visible online narratives select for people with internet access, willingness to disclose, and persistent symptoms. INOCA communities are particularly visible online and may not represent all non-obstructive disease.

See organizations.md, themes.md, and sources.md.