Experience Sharing: Difference between revisions

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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.

* '''Personal''', anyone who has taken (or is taking) the medicine themselves.

* '''Clinical''' ~~—~~ verified healthcare providers prescribing or managing it.

* '''Clinical''', verified healthcare providers prescribing or managing it.

A medicine's profile is the platform for both perspectives. The lived experience of the people who use the meds and the people who prescribe them will hopefully accumulate with sufficient numbers such that different kinds of truth emerge.<br><br>Pharmacopedia is trying to hone in on them both, for everything we can, and maybe find something like truth in this space so long devoid of granular information.

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== For everyone: the personal-perspective surfaces ==

You don't need any verification to share personal experience. Just 2-Factor Authentication (TOTP ~~+/-~~ passkey). Anything you add is reviewed by moderators before it becomes part of a page's public profile, at least for now.

You don't need any verification to share personal experience. Just 2-Factor Authentication (TOTP, optionally a passkey). 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 ===

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The medicine's page aggregates everyone's answers into a frequency and a valence balance.

'''Try it ~~—~~ click any of these:'''

'''Try it, click any of these:'''

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(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.)

(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.

Hover over any element on a medicine page (an effect, a problem, 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. This is the default '''binary''' vote.

'''Try a freestanding vote:'''

Some prompts call for a choice from a list rather than a simple agreement. The <code><vote></code> tag supports two extra modes for that:

* '''Single''', pick exactly one of several options (radio-style).

* '''Multi''', pick any subset of the options (checkbox-style).

Both render as a chart-icon chip that expands inline to a picker, with per-option count bars. Multi-option votes are how the wiki crowdsources answers to questions like ''"Which medicines should count as mood stabilizers?"'' where the honest answer is more than one.

'''Try a freestanding binary vote:'''

<vote slug="demo-vote-a">The site theme should stay purple/grey/white</vote>

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=== 3. The personal-experience block ===

At the top of every medicine page, the <code><pharmaExperience/></code> 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:

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=== 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.

If a medicine you know is missing an effect, a problem it treats, an anecdote, or a titration strategy you've encountered, file it through one of the suggestion forms. Submissions enter a moderation queue rather than going live immediately.

* [[Special:SuggestEffect|Suggest an effect]]

* [[Special:~~SuggestIndication~~|Suggest ~~an indication~~]]

* [[Special:SuggestProblem|Suggest a problem]]

* [[Special:SuggestTitration|Suggest a titration strategy]]

* [[Special:SuggestAnecdote|Suggest an anecdote]]

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=== Provider-perspective literature ===

Providers can also upload PDFs (within reason ~~&mdash~~; size limits apply) when submitting literature, not just citations. The Literature queue makes those PDFs available to admins for verification before publication.

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.

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== Beyond per-medicine reports ==

The medicine-page surfaces above are one half of how Pharmacopedia treats lived experience. The other half lives on your own profile pages, where you can keep a structured record of yourself across time and choose what (if anything) to share with whom.

* [[Special:MyProfile]] holds opt-in '''demographics''' (everything chip-pickered or sliderable: smoking, alcohol, political position, chronotype, education, employment, income, etc.) and your '''assessment results''' (CATI, CAT-Q, PID-5-BF, OCEAN/BFI-10, and others as they're added).

* [[Special:MyLifeStory]] is a free-form '''life-event timeline''' with structured event types: life events, episodes (time-bounded periods like "manic episode" or "depressive period"), and observations (free-text natural-language entries the parser pulls dates, polarity, and references out of). It renders as a visual swimlane timeline with trait-trajectory overlays.

* [[Special:MyAssessment]] is the rich-report view for individual assessments, with subscale breakdowns and time-trajectory plots.

* [[Special:MyCohorts]] is where you create and curate the '''cohorts''' you can share things with (see Privacy below).

* [[Special:MyShareLog]] is the '''audit log''' of who has viewed which of your shared records.

None of these are required. The wiki works just as well if you only ever vote on a few effects and never open any of them. They exist for users who want to build a richer self-description and have it inform their experience of medicines they take.

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== Privacy and identity ==

Pharmacopedia keeps user identity '''structurally separated''' from contributed content. Every rating, vote, and report is stored against an opaque voter hash ~~—~~ never a user ID ~~—~~ so the database itself does not link a contribution back to the account that made it.

Pharmacopedia keeps user identity '''structurally separated''' from contributed content. Every rating, vote, and report is stored against an opaque voter hash, never a user ID, so the database itself does not link a contribution back to the account that made it.

=== What is anonymized end-to-end ===

The following are '''always anonymous''' ~~—~~ there is no opt-in to attach your name:

The following are '''always anonymous''', there is no opt-in to attach your name:

* '''Up/down votes''' on any element

* '''Up/down votes''' on any element (including single/multi choice votes)

* '''Effect reports''' (yes/no/valence/frequency per effect, both personal and provider perspectives)

* '''Likert ratings''' on ~~indications~~

* '''Likert ratings''' on problems

* '''Interaction matrix votes''' and their attached free-text notes

* '''Experience-report ratings''' (efficacy, burden, duration, dose, current-use, patient count)

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* '''Literature submissions''' (citations and PDFs uploaded against a medicine page)

Both forms include a checkbox ~~—~~ '''"Show my username publicly"''' ~~—~~ that defaults to unchecked. If you leave it unchecked, the submission is stored without your username; only the voter hash is retained. If you check it, your username is stored in a separate <code>display_name</code> column and shown publicly next to the submission.

Both forms include a checkbox, '''"Show my username publicly"''', that defaults to unchecked. If you leave it unchecked, the submission is stored without your username; only the voter hash is retained. If you check it, your username is stored in a separate <code>display_name</code> column and shown publicly next to the submission.

Existing comments and literature entries from before this change kept their original attribution: at migration time, the historical username was preserved into <code>display_name</code> because those rows were posted with the implicit understanding that the name would be visible.

=== Sharing your profile, life story, and assessments ===

The medicine-page contributions above are anonymous by default. Your profile-side records (demographics, assessments, life story) are '''private by default''' and visible only to you unless you explicitly share them.

Every shareable record carries a '''visibility mode''' you choose per record:

* '''Private''' (the default), only you can see it.

* '''Default''' (attributed by your username) when the wiki normally credits authorship.

* '''Username''', attached to a public surface with your name shown.

* '''Anonymous''' (🎭), attached to a public surface with no byline; the "no byline" option hides the inline attribution line only and does not anonymize the page itself.

Beyond those four modes, you can also share specific records via:

* '''Cohorts''', named groups of named users you've curated at [[Special:MyCohorts]]. Sharing to a cohort grants exactly that cohort access to exactly that record.

* '''Link tokens''', one-off opaque URLs you can send to anyone (including non-users) for a single record. Tokens are revocable.

* '''Reciprocal sharing''', records visible to anyone who has shared their own equivalent record with you.

Every view of a shared record is logged. You can audit who has seen what at [[Special:MyShareLog]] (IPs are masked).

=== Edit and delete of your own contributions ===

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* The verification decision is logged with the reviewing admin's identity, not the applicant's documents.

=== What is not collected ===

=== What is not collected, and what is opt-in ===

* ~~No demographic information (age, sex, race, location).~~

* '''Not collected at all:''' tracking cookies, analytics scripts, third-party beacons, or client-side identifiers in the markup of voted/rated elements that could be cross-referenced to other rows.

* No tracking cookies, analytics scripts, or third-party beacons.

* '''Collected only with your participation, on your own profile:''' demographics (age, sex, gender, location, smoking, alcohol, etc.) and assessment results. These live at [[Special:MyProfile]], are private to you by default, and you choose whether and how to share them. They are never automatically attached to any per-medicine rating or vote you make.

* No client-side identifiers in the markup of voted/rated elements that could be cross-referenced to other rows.

=== Caveats ~~—~~ what this does and doesn't protect against ===

=== Caveats, what this does and doesn't protect against ===

* The HMAC secret lives in <code>LocalSettings.php</code> on the server. A '''determined administrator''' with both source-code access AND database access could still recompute the hash for a given user id and cross-reference rows. The protection is against casual DB inspection and against breach of the database alone ~~—~~ not against the server operator acting in bad faith.

* The HMAC secret lives in <code>LocalSettings.php</code> on the server. A '''determined administrator''' with both source-code access AND database access could still recompute the hash for a given user id and cross-reference rows. The protection is against casual DB inspection and against breach of the database alone, not against the server operator acting in bad faith.

* MediaWiki's core revision history (wiki edits, page moves) still records the editing account name as part of normal wiki history. That data is separate from the contribution surfaces described above.

* Comments and literature submissions you mark "show my username" remain public until you delete them.

* Records you share to a cohort, by username, or by link token are visible to whoever you've granted access, until you revoke that access.

MDElliottMD (talk | contribs)