About the Patient Experience Database
How we collect, index, and protect chronic illness data — and why we built it the way we did.
Why this exists
People with chronic illness spend enormous amounts of time researching their conditions — often at 2am, often on a phone, often in a brain-fog state where reading a full PubMed abstract is the cognitive equivalent of running a marathon. They also spend time in Reddit threads, YouTube comments, and Facebook groups because that's where the real-world experience lives — the dosing that actually works, the symptom patterns no one writes papers about, the vindication of knowing someone else has the same weird thing.
Most health databases are built for clinicians. This one is built for patients. It combines the rigour of peer-reviewed research with the honesty of community experience, and makes both searchable in one place.
Data sources
How: NCBI E-utilities API (free, open-access). Abstracts are always publicly available regardless of journal paywall status.
What we store: Title, abstract, authors (last names only), journal, publication date, DOI. Full article text is never stored.
How: Official Reddit API with OAuth 2.0 application-only auth. Subreddits: r/ChronicPain, r/fibromyalgia, r/cfs, r/lupus, r/eds, r/POTS, r/ChronicIllness, r/spoonies, r/dysautonomia, and more.
What we store: Post title, subreddit name, and permalink only. Post body text, usernames, and author information are never extracted or stored.
How: YouTube Data API v3. Searched with terms like "[condition] patient experience" and "living with [condition]".
What we store: Video title, channel name, video ID, and thumbnail URL. Descriptions (which may contain personal health disclosures) are never stored.
GDPR & health data
Health data is special category data under GDPR Article 9. We take this seriously. Our core design principle is: if we don't need it, we don't store it.
- Reddit post body text is never extracted — only titles and links
- YouTube descriptions are never stored — only titles and IDs
- No username or author data is stored from any source
- Search logs are pseudonymised with a one-way hash — no user linkage
- YouTube iframes are click-to-load — no Google connection until you choose
- No user health profiles are built or inferred
Frequently asked questions
What is the Patient Experience Database?
It's a searchable index of chronic illness content from three sources: peer-reviewed research from PubMed (open-access abstracts), community discussions from Reddit (titles and links only — no post body text), and patient experience videos from YouTube (embedded, click-to-load). All content links back to its original source.
What conditions are covered?
Currently 76 conditions spanning core spoonie diagnoses (fibromyalgia, ME/CFS, POTS, EDS, hEDS, MCAS, long COVID), autoimmune conditions, hormonal and reproductive conditions, neurological, gastrointestinal, structural/vascular, sleep disorders, and rare conditions. The database grows nightly via automated sync.
Where does the data come from?
Three official sources only. PubMed via NCBI E-utilities (open-access, abstracts always freely available). Reddit via the official Reddit API with OAuth 2.0 — we store only title, subreddit, and permalink, never post body text or usernames. YouTube via the official YouTube Data API v3 — we store only video title, channel name, and video ID for embedding.
Why do Reddit posts show only a title and link?
Reddit post body text may contain personal health disclosures — storing it would create GDPR Article 9 (special category health data) obligations that are disproportionate for a search index. We store only the post title and a link back to Reddit, so you always read it in context on Reddit's own platform.
Why do YouTube videos require a click to play?
Embedding a YouTube iframe automatically loads Google's tracking cookies, which under GDPR requires explicit consent. Our click-to-load pattern means no YouTube connection is made until you choose to watch. The small "Clicking loads YouTube and its cookies" notice is intentional — it's not legalese, it's a genuine heads-up.
Is my search tracked?
Search queries are logged for analytics (so we can see which conditions people search most), but logs are pseudonymised — your IP address is hashed with a salt before storage, and there is no link between search logs and user accounts. We cannot identify who searched for what.
How often is the database updated?
A sync runs daily at 03:00 UTC. It fetches the latest 10 PubMed articles per condition, recent Reddit posts from condition-specific subreddits, and relevant YouTube videos. Each run upserts — it won't create duplicates.
Can I suggest a condition that's missing?
Yes — use the contact page or open an issue on GitHub. We're especially keen to add conditions that are underrepresented in mainstream health databases.
Is this medical advice?
No. This is a research and community experience index — it surfaces what researchers and patients are saying, not clinical guidance. Nothing here should be used to make healthcare decisions without consulting a qualified clinician. We are a chronic illness learning platform, not a medical provider.
What is spoons.world?
"Spoons" is shorthand for Spoon Theory — Christine Miserandino's framework for explaining limited energy to people without chronic illness. spoons.world is the home of this Patient Experience Database, and is part of Spooniversity, a learning platform built for people with chronic illness by people with chronic illness.