Experience Sharing
More actions
What experience sharing is
Every medicine page on Pharmacopedia carries two parallel streams of experiential data, kept rigorously separate everywhere they're rendered:
- Personal — anyone who has taken (or is taking) the medicine themselves.
- Clinical — verified healthcare providers prescribing or managing it.
A medicine's profile is the conversation between those two perspectives. The lived experience of the person who takes a drug and the provider's view of the same drug across hundreds of patients are different kinds of truth, and Pharmacopedia is trying to hone them both, and maybe find some consensus(?).
For everyone: the personal-perspective surfaces
You don't need any verification to share personal experience. Just 2-Factor Authentication. Anything you add is reviewed by moderators before it becomes part of a page's public profile, at least for now.
1. Rate an effect
Every medicine page lists named effects (sleepiness, appetite changes, libido, etc.) using the <effect> tag. Click any effect to expand its controls:
- Did you experience it? yes / no
- Was it wanted (good) or unwanted (bad)? positive / neutral / negative
The medicine's page aggregates everyone's answers into a frequency and a valence balance.
Try it — click any of these:
(These five demo effects exist only on this page. Click them, change your answer, refresh — your responses persist, but no real medicine page sees them.)
2. Vote on existing items
Hover over any element on a medicine page — an effect, an indication, an anecdote — and a small up/down arrow appears. One click registers your agreement or disagreement with whatever the element says. The vote totals appear next to the arrows.
Try a freestanding vote:
The site theme should stay purple/grey/white0
The Pendell's corner callouts should appear at the top of each page rather than the bottom0
3. The personal-experience block
At the top of every medicine page, the <pharmaExperience/> tag renders a compact readout summarizing all approved personal and clinical reports. Logged-in users can add or update their own report below the readout.
For a personal report, the form asks:
- Effective for you? (0–5)
- Side-effect burden? (0–5)
- How long have you taken it? (single day / weeks / months / years)
- Are you still taking it?
- Optional: median daily dose, primary route
The live block, scoped to this page:
Log in to add your own experience.
4. Suggest something that's missing
If a medicine you know is missing an effect, indication, anecdote, or titration strategy you've encountered, file it through one of the suggestion forms. Submissions enter a moderation queue rather than going live immediately.
5. Share a relevant article
The "Relevant literature" section at the bottom of every medicine page accepts user-submitted references via the <pharmaLiterature/> form: title, author, year, DOI/PMID/URL. Submissions are queued for moderator review before they appear publicly.
For verified providers
Providers are users who have applied at Special:VerifyProvider and been approved by an administrator. Verification grants the provider user-group, which unlocks an additional perspective on every widget.
The provider perspective on effects
When a provider opens an <effect> widget, they see a second set of inputs alongside the patient inputs:
- How often does this happen, across your patients? (0%, <10%, ~20%, ~33%, ~50%, ~66%, ~80%, 90+%)
- Clinical valence: wanted / neutral / unwanted
Patient and provider data are stored separately and aggregated separately. The readout shows both:
👥 12 personal reports · avg efficacy 3.4/5 · avg side-effect burden 2.1/5 · median use 8 months · median dose 20 mg/day · 67% still taking it
⚕ 4 provider reports · avg efficacy 3.8/5 · avg side-effect burden 1.6/5 · 1,247 patients managed total
Provider-perspective experience report
The <pharmaExperience/> block, for providers, asks:
- Clinical efficacy across the patients you've managed (0–5)
- Clinical side-effect burden across those patients (0–5)
- Approximate patient count
- Typical starting and target doses
- Notes (optional, free text)
Provider-perspective literature
Providers can also upload PDFs (within reason — size limits apply) when submitting literature, not just citations. The Literature queue makes those PDFs available to admins for verification before publication.
Privacy and identity
- Usernames are visible next to submitted anecdotes, votes, and literature entries.
- Personal-experience reports (efficacy/burden ratings) are aggregated into the readout but individual reports are not linked to usernames on the public page.
- Provider documents uploaded for verification are deleted immediately after the admin decision — approved or rejected. Nothing is retained.
- No demographic information is collected.