Experience Sharing - Revision history

MDElliottMD: /* 1. Rate an effect */

2026-05-19T01:11:19Z

1. Rate an effect

← Older revision		Revision as of 01:11, 19 May 2026
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	* '''Did you experience it?'''   yes / no		* '''Did you experience it?'''   yes / no
	* '''How as it?'''   ~~positive / neutral / negative~~		* '''How as it?'''   -100 (worst) to +100 (best)

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

MDElliottMD at 01:10, 19 May 2026

2026-05-19T01:10:39Z

← Older revision		Revision as of 01:10, 19 May 2026
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	== What experience sharing is ==		== What experience sharing is ==

	Every medicine page on Pharmacopedia carries '''two parallel streams''' of experiential data, kept rigorously separate everywhere they're rendered:		Every [[Category:Medicine\|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.		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 several different sorts of truth emerge.<br><br>Pharmacopedia is trying to hone in on them all, however we can, and maybe find precision and accuracy in this space so long devoid of granular information.

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

	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.		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.

	=== 1. Rate an effect ===		=== 1. Rate an effect ===

	Every medicine page lists named effects (sleepiness, appetite ~~changes~~, libido, etc.) using the <code><effect></code> tag. Click any effect to expand its controls:		Every medicine page lists named effects (sleepiness, appetite suppression, libido, etc.) using the <code><effect></code> tag. Click any effect to expand its controls:

	* '''Did you experience it?'''   yes / no		* '''Did you experience it?'''   yes / no
	* '''~~Was~~ it ~~wanted (good) or unwanted (bad)~~?'''   positive / neutral / negative		* '''How as it?'''   positive / neutral / negative

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

MDElliottMD: Modernize Experience Sharing: rename indications->problems (3 spots + SuggestIndication->SuggestProblem); document single/multi modes; add 'Beyond per-medicine reports' section pointing at Special:MyProfile / MyLifeStory / MyAssessment / MyCohorts / MyShareLog; expand Privacy with the 4-level visibility mode, cohorts, link tokens, reciprocal sharing, share-log; soften 'no demographic information' to acknowledge opt-in profile-side demographics; strip all em-dashes per the standing proj...

2026-05-19T00:53:19Z

Modernize Experience Sharing: rename indications->problems (3 spots + SuggestIndication->SuggestProblem); document <vote> single/multi modes; add 'Beyond per-medicine reports' section pointing at Special:MyProfile / MyLifeStory / MyAssessment / MyCohorts / MyShareLog; expand Privacy with the 4-level visibility mode, cohorts, link tokens, reciprocal sharing, share-log; soften 'no demographic information' to acknowledge opt-in profile-side demographics; strip all em-dashes per the standing proj...

Show changes

MDElliottMD at 02:16, 16 May 2026

2026-05-16T02:16:30Z

← Older revision		Revision as of 02:16, 16 May 2026
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	* '''Clinical''' — verified healthcare providers prescribing or managing it.		* '''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(?)~~.		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.

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

	=== 1. Rate an effect ===		=== 1. Rate an effect ===
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	<effect slug="demo-vivid" label="Vivid dreams"/>		<effect slug="demo-vivid" label="Vivid dreams"/>

	(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 ===		=== 2. Vote on existing items ===

Maintenance script: Rewrite Privacy section to reflect current voter-hash architecture

2026-05-16T00:29:33Z

Rewrite Privacy section to reflect current voter-hash architecture

@@ Line 115: / Line 115: @@
 == Privacy and identity ==
-* Usernames are visible next to submitted anecdotes, votes, and literature entries.
+Pharmacopedia keeps user identity '''structurally separated''' from contributed content. Every rating, vote, and report is stored against an opaque voter hash &mdash; never a user ID &mdash; so the database itself does not link a contribution back to the account that made it.
-* 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 &mdash; approved or rejected. Nothing is retained.
+=== What is anonymized end-to-end ===
-* No demographic information is collected.
 ----

MDElliottMD at 23:56, 15 May 2026

2026-05-15T23:56:33Z

@@ Line 122: / Line 122: @@
 ----
 [[Category:Pharmacopedia]]
 [[Category:Documentation]]

MDElliottMD at 23:47, 15 May 2026

2026-05-15T23:47:52Z

← Older revision		Revision as of 23:47, 15 May 2026
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	<div class="pcp-banner">		<div class="pcp-banner">
	<span class="pcp-banner__title pcp-banner__title--lg">Experience Sharing</span>		<span class="pcp-banner__title pcp-banner__title--lg">Experience Sharing</span>
	<span class="pcp-banner__body">The dual-perspective ~~heart~~ of Pharmacopedia ~~—~~ how ~~readers, patients,~~ and clinicians contribute lived ~~and observed knowledge~~ to every ~~medicine page.~~</span>		<span class="pcp-banner__body">The dual-perspective core of Pharmacopedia<br>how users and clinicians contribute lived experience to every facet of the site</span>
	</div>		</div>

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	* '''Clinical''' — verified healthcare providers prescribing or managing it.		* '''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 ~~prescriber~~'s view of the same drug across hundreds of patients are different kinds of truth, and Pharmacopedia ~~tries hard not~~ to ~~collapse~~ them.		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(?).

	~~This page explains the contribution surfaces~~, ~~shows you the interface elements, and lets you '''play with them safely''' — every interactive widget below is tagged <code>demo-*</code> so your clicks here stay on this page~~ and ~~never affect a real medicine~~.

	~~----~~

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

	You don't need any verification to share personal experience. Anything you add is ~~reviewable~~ by moderators before it becomes part of a page's public profile.		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 ===		=== 1. Rate an effect ===
Line 114:		Line 110:

	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.		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.

	~~----~~

	~~== How submissions become content ==~~

	~~Nothing is automatically public. Every contribution route ends at a moderation queue:~~

	* '''Experience reports''' → [[Special:ReviewExperience]]
	* '''Provider applications''' → [[Special:ProviderApplications]]
	* '''Literature submissions''' → [[Special:LiteratureQueue]]
	* '''New effects / indications / titrations / anecdotes''' → the admin's [[Special:PCPCtrls\|controls dashboard]]

	~~The dashboard surfaces pending counts as a badge so admins can see what needs review at a glance.~~

	----		----
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	\| <code><discuss/></code> \|\| Threaded comment block \|\| Anywhere discussion is useful		\| <code><discuss/></code> \|\| Threaded comment block \|\| Anywhere discussion is useful
	\|}		\|}

	~~----~~

	<small>This page's interactive widgets are real implementations — the same code that runs on every medicine page. They're scoped to this page only via demo slugs, so feel free to click around. Refresh, change your mind, click again. Nothing here affects production data on any actual medicine.</small>

	[[Category:Pharmacopedia]]		[[Category:Pharmacopedia]]
	[[Category:Documentation]]		[[Category:Documentation]]

Maintenance script: Create Experience Sharing documentation page

2026-05-15T23:37:39Z

Create Experience Sharing documentation page

New page

__NOTOC__

<div class="pcp-banner">
<span class="pcp-banner__title pcp-banner__title--lg">Experience Sharing</span>
<span class="pcp-banner__body">The dual-perspective heart of Pharmacopedia — how readers, patients, and clinicians contribute lived and observed knowledge to every medicine page.</span>
</div>

== 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 prescriber's view of the same drug across hundreds of patients are different kinds of truth, and Pharmacopedia tries hard not to collapse them.

This page explains the contribution surfaces, shows you the interface elements, and lets you '''play with them safely''' — every interactive widget below is tagged <code>demo-*</code> so your clicks here stay on this page and never affect a real medicine.

----

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

You don't need any verification to share personal experience. Anything you add is reviewable by moderators before it becomes part of a page's public profile.

=== 1. Rate an effect ===

Every medicine page lists named effects (sleepiness, appetite changes, libido, etc.) using the <code><effect></code> 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:'''

<effect slug="demo-drymouth" label="Dry mouth"/>
<effect slug="demo-libido" label="Increased libido"/>
<effect slug="demo-energy" label="Increased energy"/>
<effect slug="demo-headache" label="Headache"/>
<effect slug="demo-vivid" label="Vivid dreams"/>

(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:'''

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

<vote slug="demo-vote-b">The Pendell's corner callouts should appear at the top of each page rather than the bottom</vote>

=== 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:

* 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:'''

<pharmaExperience/>

=== 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.

* [[Special:SuggestEffect|Suggest an effect]]
* [[Special:SuggestIndication|Suggest an indication]]
* [[Special:SuggestTitration|Suggest a titration strategy]]
* [[Special:SuggestAnecdote|Suggest an anecdote]]

=== 5. Share a relevant article ===

The "Relevant literature" section at the bottom of every medicine page accepts user-submitted references via the <code><pharmaLiterature/></code> 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 <code>provider</code> user-group, which unlocks an '''additional perspective''' on every widget.

=== The provider perspective on effects ===

When a provider opens an <code><effect></code> 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:

<blockquote class="pcp-demo-readout">
👥 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<br>
⚕ 4 provider reports · avg efficacy 3.8/5 · avg side-effect burden 1.6/5 · 1,247 patients managed total
</blockquote>

=== Provider-perspective experience report ===

The <code><pharmaExperience/></code> 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.

----

== How submissions become content ==

Nothing is automatically public. Every contribution route ends at a moderation queue:

* '''Experience reports''' → [[Special:ReviewExperience]]
* '''Provider applications''' → [[Special:ProviderApplications]]
* '''Literature submissions''' → [[Special:LiteratureQueue]]
* '''New effects / indications / titrations / anecdotes''' → the admin's [[Special:PCPCtrls|controls dashboard]]

The dashboard surfaces pending counts as a badge so admins can see what needs review at a glance.

----

== 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.

----

== Reference: the widget vocabulary ==

The wiki uses a small set of custom MediaWiki tags for these surfaces:

{| class="wikitable"
! Tag !! Purpose !! Where it lives
|-
| <code><pharmaExperience/></code> || Per-page experience readout + entry form || Top of each medicine page
|-
| <code><effect slug="..." label="..."/></code> || Single named effect with click-to-rate || Inside the page's Effects section
|-
| <code><indication>...</indication></code> || Named indication with voting + provider data || Inside the page's Indications section
|-
| <code><anecdote>...</anecdote></code> || A free-text personal/clinical story || Inside the Relevant anecdote section
|-
| <code><titration>...</titration></code> || A start/escalation/taper protocol || Inside the Titration strategies section
|-
| <code><vote slug="..." label="..."/></code> || Standalone yes/no vote || Anywhere a binary opinion is useful
|-
| <code><pharmaInteractions/></code> || Interaction matrix for this medicine || Inside the Interactions section
|-
| <code><pharmaLiterature/></code> || Reference list + submission form || Bottom of each medicine page
|-
| <code><discuss/></code> || Threaded comment block || Anywhere discussion is useful
|}

----

<small>This page's interactive widgets are real implementations — the same code that runs on every medicine page. They're scoped to this page only via demo slugs, so feel free to click around. Refresh, change your mind, click again. Nothing here affects production data on any actual medicine.</small>

[[Category:Pharmacopedia]]
[[Category:Documentation]]