Wikipedia and Regional Standards of Care

7/30/2019 Wikipedia and Regional Standards of Care

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Wikipedia and Regional

Standards of Care

Gary Takher, Pharm.D, MBA, RPhVisiting Scientist Fellow, Clinical Open Innovation

Eli Lilly and Company


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Key Objectives

Provide context on the Purpose of the Project

Provide a General Overview of Wikipedia

Discuss Engagement Approach and Learning Discuss the Future of WikiProject Medicine

Provide Recommendations


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Purpose

Primary: Learn about the processes and

cultural norms within Wikipedia

Secondary: Test external crowd-sourced

methodologies by engaging with the

Wikipedia community and stimulate global

crowd intelligence on regional standards of

care (SOC)


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Why Wikipedia?

Worlds largest free open

encyclopedia

Represents over 285

different languages

Top results in a search

query

Has demonstrated self-

sustainability

Wikipedia (2013). Image retrieved from http://www.wikipedia.orgon March 13, 2013.

Disclaimer: No partnership between Lilly and Wikipedia existed during this project
http://www.wikipedia.org/http://www.wikipedia.org/http://www.wikipedia.org/


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The Wikimedia Foundation Umbrella

Underneath the WikiMedia Foundation umbrella

Wikimedia Foundation (2013). Image retrieved from http://wikimediafoundation.org/wiki/Home on March 13, 2013.
http://wikimediafoundation.org/wiki/Homehttp://wikimediafoundation.org/wiki/Homehttp://wikimediafoundation.org/wiki/Home


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Activity (per month basis)

MediaWiki (2013). Retrieved from http://www.mediawiki.org/wiki/Editor_Engagement/2013_strategy_planning_(Features) on March 13, 2013.
http://www.mediawiki.org/wiki/Editor_Engagement/2013_strategy_planning_(Featureshttp://www.mediawiki.org/wiki/Editor_Engagement/2013_strategy_planning_(Features


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Approach

Project initiation

Identified an applied use case to engage

(Regional SOC)

Created a mock-up article on Regional SOC in

sandbox page (less risk in posting here)

Vetted mock-up past WikiProject Medicinecommunity

Engaged outside of Regional SOC


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Approach Project Initiation

Consulted with Expert Wikipedians

Provided insight on possibilities to engage

Steven Walling

Associate Project Manager, Wikimedia Foundation

Jake Orlowitz (User:Ocaasi)

Expert Wikipedian

Wikipedia administrator

Lane Rasberry (User:Bluerasberry)

Expert Wikipedian Wikipedian-in-Residence at Consumer Reports

James Heilman (User:Doc James)

Lead Administrator and Activist in WikiProject Medicine(WP:Med)

Canadian ER Physician


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Approach Project Initiation

Developed Project Charter

Project Scope

Compliance Checklist

Timeline

Risk & Mitigation Strategy

Communications


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Approach Identified an Applied Use Case

Consulted with Lilly personnel

Lilly Clinical Open Innovation team

Indy-based and Local Affiliate

Created a mock-up article on Regional SOC Used sandbox pages

Hypertension in Scotland

Scotland uses unique guidelines (SIGN) Lilly does not have hypertension products

Hypertension a well understood disease state (highprobability guidelines available in emerging countries)


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Approach Vetted Mock-up past WP:Med

Proposed idea on the Talk page of WP:Med

Obtained some feedback from community,

including lead administrator User:Doc James

Created new pages based on feedback


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Approach Engaged in other areas

Engaged in other areas

WikiProject Council

Are there WikiProject Medicines in other languages?

Village Pump

Are there reference management tools?

Submitted article on Lyme Disease for peer-review

for feedback on how to improve articles What is wrong with this article?


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How does it work? (Macro-level)

Wikipedia

English

Choose from 285

different

languages(English)

Other languages

Over 285 different languages to edit in

Each language is its own silo All languages under the same terms of use


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Wikipedia

English

Choose from 285

different

languages(English)

WikiProjects manage specific category of articles

WikiProject in other languages may have slightly

different rules for editors (greater complexity)

Other choices (language, project)

WP:Med

Choose a specific

project

(WikiProject

Medicine)


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Wikipedia

English

Choose from 285

different

languages(English)

Other choices (language, project, disease state)

WP:Med

Choose a specific

project

(WikiProject

Medicine)

Disease State

Articles

Focused in different

areas

(main focus is on

disease state articles)

Disease States is a specific category of articles


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Wikipedia

English

Choose from

285 different

languages

(English)

Other choices (language, project, disease state)

WP:Med

Choose a specific

project(WikiProject

Medicine)

Disease

State

Articles


areas

(main focus is on


WikiProject area of focus is based on importance scale

Importance

Scale

HighMedium

Low

High Clinical TrialArticles

Low

Medication

Articles

Medium


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Pros Rationale

User page Allows users to post what they want about themselves

User email Message delivered to recipients preferred email

Sandbox Practice/vet models without publishing to the main page

Talk page Allows for community to have discussion near the content

View History Provides an audit trail for contributed content

Watchlist Provides a means for continuous content monitoring

Contributions Allows for editor to look back on content edited

Meritocracy

Contributors recognized for their efforts (e.g. Barnstar badges)

How does it work? (Micro-level)


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Top 5 Rules for Engagement

Rules

1. Be Bold Take the initiative to contribute andupdate the encyclopedia

2. Use reliable resources Reliable sources are those that haveexpertise backing the content and

establish the credibility of the content

3. Maintain a neutral point-of-view Helps content sound encyclopedic insteadof biased

4. Remain civil and assume good faith There are no visual cues behind text. Helpeach other out.

5. Do not edit pages where you have

a conflict of interest

Editing the Eli Lilly & Company page is not

allowed.
http://en.wikipedia.org/wiki/Wikipedia:Be_boldhttp://en.wikipedia.org/wiki/Wikipedia:Reliable_sourceshttp://en.wikipedia.org/wiki/Wikipedia:Neutral_point_of_viewhttp://en.wikipedia.org/wiki/Wikipedia:Assume_good_faithhttp://en.wikipedia.org/wiki/Wikipedia:Conflict_of_interesthttp://en.wikipedia.org/wiki/Wikipedia:Conflict_of_interesthttp://en.wikipedia.org/wiki/Wikipedia:Conflict_of_interesthttp://en.wikipedia.org/wiki/Wikipedia:Conflict_of_interesthttp://en.wikipedia.org/wiki/Wikipedia:Assume_good_faithhttp://en.wikipedia.org/wiki/Wikipedia:Neutral_point_of_viewhttp://en.wikipedia.org/wiki/Wikipedia:Neutral_point_of_viewhttp://en.wikipedia.org/wiki/Wikipedia:Neutral_point_of_viewhttp://en.wikipedia.org/wiki/Wikipedia:Neutral_point_of_viewhttp://en.wikipedia.org/wiki/Wikipedia:Neutral_point_of_viewhttp://en.wikipedia.org/wiki/Wikipedia:Reliable_sourceshttp://en.wikipedia.org/wiki/Wikipedia:Be_bold


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Questions, Ideas, and Concerns?

Where Editorsgo for

Feedback or

Escalation

1. Wikipedia (2013). Retrieved from http://en.wikipedia.org/wiki/Wikipedia:Talk_page on March 13, 2013.2. Wikipedia (2013). Retrieved from http://en.wikipedia.org/wiki/WikiProject_Council on March 13, 2013.

3. Wikipedia (2013). Retrieved from http://en.wikipedia.org/wiki/Wikipedia:Village_pump_(technical ) on March 13, 2013.

WikiProject Talk page Project proposals

Project coordination

Inter-project collaborations

Editor Talk page Small talk advice

Feedback

Merit

Village Pump Talk page Idea lab

Policy

Proposal development

Technical

Misc

Editor Sandbox page Practice using a Wiki

Create proposals/mock-ups
http://en.wikipedia.org/wiki/Wikipedia:Talk_pagehttp://en.wikipedia.org/wiki/WikiProject_Councilhttp://en.wikipedia.org/wiki/Wikipedia:Village_pump_(technicalhttp://en.wikipedia.org/wiki/Wikipedia:Village_pump_(technicalhttp://en.wikipedia.org/wiki/WikiProject_Councilhttp://en.wikipedia.org/wiki/WikiProject_Councilhttp://en.wikipedia.org/wiki/Wikipedia:Talk_pagehttp://en.wikipedia.org/wiki/Wikipedia:Talk_pagehttp://en.wikipedia.org/wiki/Wikipedia:Talk_page


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Mock-up Article for Regional SOC


Article is region specific

Sub-category info includes:

Epidemiology

Diagnosis

Management
http://en.wikipedia.org/wiki/User:GT67/articlehypertensioninscotlandhttp://en.wikipedia.org/wiki/User:GT67/articlehypertensioninscotland


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HYPERTENSIONMain

Disease State

Article

Epidemiology of

Hypertension

Diagnosis of

Hypertension

Management of

Hypertension

Forked from Main Article

How does WikiProject Medicine want Regional info formatted?

VS.

HYPERTENSIONIn SCOTLAND

HYPERTENSION

In CHINA

HYPERTENSION

In [X COUNTRY]

Country-specific Main Articles

.

.

.

WikiProject Medicine

Preference


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Mock-up Article for Regional SOC


Article is sub-category specific

Epidemiology of Hypertension

Diagnosis of Hypertension

Management of Hypertension

Article itself is regionalized:

Africa

Asia

Europe

The Americas

Oceana and the Pacific
http://en.wikipedia.org/wiki/User:GT67/epidemiologyofhypertensionhttp://en.wikipedia.org/wiki/User:GT67/diagnosisofhypertensionhttp://en.wikipedia.org/wiki/User:GT67/managementofhypertensionhttp://en.wikipedia.org/wiki/User:GT67/managementofhypertensionhttp://en.wikipedia.org/wiki/User:GT67/diagnosisofhypertensionhttp://en.wikipedia.org/wiki/User:GT67/epidemiologyofhypertension


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Community Engagement on Regional SOC

English Domain (Low)

More pressing priorities

Capacity constrained

Skepticism (New editor, working for pharma, etc.)

Other language domains (Low)

Skepticism

More stringent rules in some (increased risk of conflict)

Communication barriers

Feedback from Jake (Wikipedia Consultant)

Stay in English WP:Med to run experiment


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Engagement Outside Regional SOC

Village Pump

Reference management tools not currently used

Lyme Disease article peer-review

Obtained feedback from the community

Deficiency

Need to convert primary resources into secondaryresources

Pharma data is made up of primary resources


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Other choices (language, project, disease states); WP:Med = WikiProject Medicine

Wikipedia

English

Choose from 285

different

languages

(English)

Choose a specific

project

(WikiProject

Medicine)WP:Med


areas

(main focus is ondisease state articles)

Collaborative

PublicationTranslation

Task Force

Good Article

Goals 2013

Disease StateArticles

Projects main goals

Main Goals for WikiProject Medicine


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Focused in differentareas

(main focus is on


Disease State

Articles

Current GA/FA

Articles

Good Article

Goals 2013+

Collaborative

Publication

PubMed

Translation

Task Force

Get Content

to Other

CountriesEnd Goal

These are the standards by which a

disease stateshouldbe managed(high-level specific content)

Message

Projects current

main goals

The Goals of WikiProject Medicine: High Quality and Access to All

WikiProject:Medicine


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Focused in differentareas

(main focus is on


Disease State

Articles

Current GA/FA

Articles

Good Article

Goals 2013+

Collaborative

Publication

PubMed

Translation

Task Force

Get Content

to Other

CountriesEnd Goal

These are the standards by which a

disease stateshouldbe managed(high-level specific content)

Message

Adding

regionalized

info

Get Content

from Other

Countries

These are the standards by which

diseases are currentlymanaged in a

country (specific content)

The Goal of Lilly-COI: Stimulate knowledge on Regional SOC

Projects current

main goals

WikiProject Medicine Lilly-COI


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areas

(main focus is on


Disease State

Articles

Current GA/FA

ArticlesGood Article

Goals 2013+

Collaborative

Publication

PubMed

Translation

Task Force

Get Content

to Other

Countries

Projects current

main goals

Future of WikiProject Medicine



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+

Cochrane

Collaboration


areas

(main focus is on


Disease State

Articles

Current GA/FA


Goals 2013+

Collaborative

Publication

PubMed

Translation

Task Force

Get Content

to Other

Countries

Wikipedia becomes THE global

distribution channel for evidence-

based medicine

Projects current

main goals


Future goals

Cochrane-Wiki Collaborative

Future of WikiProject Medicine: Evidence-based Medicine
http://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/Cochrane_collaborationhttp://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/Cochrane_collaborationhttp://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/Cochrane_collaborationhttp://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/Cochrane_collaboration


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+

WHO/ICD-

11/iCAT


areas

(main focus is on


Disease State

Articles

Current GA/FA


Goals 2013+

Collaborative

Publication

PubMed

Translation

Task Force

Get Content

to Other

Countries

Wikipedia will leverage the iCAT

platform to incorporate ICD-11

material into Wikipedia

Projects current

main goals


Future goals

ICD-11 & iCAT

Future of WikiProject Medicine: WHO & ICD-11
http://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/ICD11http://bmir.stanford.edu/publications/view.php/icat_a_collaborative_authoring_tool_for_icd_11http://bmir.stanford.edu/publications/view.php/icat_a_collaborative_authoring_tool_for_icd_11http://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/ICD11http://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/ICD11http://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/ICD11


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Other Future Items

Future emerging countries will have free

access to this information

Mobile device capabilities

WP:Med establishes a Foundation (Jan 2013)

Geared to help facilitate partnerships with non-

profit organizations

Make transactions more fluid/transparent

Wiki SyntaxVisual Editor mode (Wikipedia)


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Bottlenecks for building out Regional SOC

Lilly has tosupply the

editors

Lack of existing

editors in

WP:Med (more

pressing

priorities)

Paid

editor rule

Lilly paid editorscannot edit areas

where there is a

conflict of interest

(Lilly Disease

States?)

Secondary

resource

rule

A S. Korean physicianwho follows the UK

(NICE) guidelines must

have a secondary

resource to cite that

remark in Wikipedia(Hypothetical example)

Large learning

curve to

understand Wiki

Syntax

Visual Editormode is in the

works (more

user friendly)

R d i b d M L i


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Reflection Recommendation

Recruiting internal editors a challenge for even

reputable Wikipedia editors in the community Lilly would need to recruit editors

Extensive training and education on Wiki use

While the Regional SOC in Wikipedia concept is unique and

has engaged some interest from a few, the reality is that thefollowing are barriers that pose risk:

Lots of grey area on paid editor rule

Traditionalists who call out private organizations coming

into Wikipedia (has lead to bad PR)

Philanthropic mindset vs. meeting a business need

Secondary resources only

Not a lot of global representation in English WP:Med Other languages lack interest or are skeptical

Counterintuitive methodologies

Project recruitment is a challenge for even experienced

editors

Consultants within Wikipedia have expressed that one of

their fundamental problems is recruiting new editors into

Wikipedia.

WikiProject Medicine has started an initiative to get articles

to better status with the intent to publish articles onto

PubMed. The initiative is taking precedence over other

projects.

Due to the constraints above I recommend that incorporating

Regional SOC in Wikipedia be put on the backburner for now

until more clarity is established.

Paid editor rule not granular

Better to have a Wikipedian-in-Residence - consultant

(has not yet been done with private organizations)

Philanthropic community calling out that private

organization hear for business needs

There needs to be a secondary resource stating that

S. Korea uses guidelines from X country

Gap in internet use in certain countries (e.g. India)

Perhaps mobile solution needed

WP:Med medicine seeking to get info out on best

standards

SOC = standards of care; WP:Med = WikiProject Medicine

Recommendation based on My Learnings


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Recommendation: Future Wikipedia Revisit

What needs to be different before private

organizations can engage with reduced risk?

Top-level management in WikiProjects from Wikipedia

Scout opportunities/partnerships

Bring transparency of partnerships down to editor level

Rules need more clarity

Paid editor rule/Conflict of interest rule Secondary resource rule


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Recommendations for Wikipedia

Global Participation

Global representation in WP:Med (English)

Global central hub

Opening private organization contributions

Reference Management Tool (e.g. Zotero)

Bridging crowd consensus platforms

OSQA-like platform
http://www.zotero.org/http://www.osqa.net/http://www.osqa.net/http://www.zotero.org/


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Global Central Hub for Regionalized Info

Wikipedia

English

WP:Med

Regionalized

Standard of Care

Melting Pot(Hub for Global

Discussion/Consensus)

Input into

English

Disease

State Article

Translate

back to

other

languages

Global Representation of: Epidemiology

Diagnostic techniques used

Management techniques

Health Outcomes data

Side-by-side language translations:

Use Googles new Translator Toolkit

(see here) human translation

Wikipedia friendly

Top down management

Set consistency between

different language domains

Set project

priorities/partnerships

Etc.

All other

Language

Domains

+
http://translate.google.com/about/intl/en_ALL/tour.htmlhttp://translate.google.com/about/intl/en_ALL/tour.html


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External Reference Management Tool

WikipediaReference

Management

Tool

All Organizations

(including private)

Risks:

Illegal file sharing?

(e.g. Napster)

Dump

information

into here

Wikipedians


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Tethered Crowd Consensus Platform

Management of Diabetes

~~~~~~~~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~~

Scotland

~~~~~~~~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~~

South Korea ?

Spain

~~~~~~~~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~~

Regionalized Wikipedia Article

Secondary

Resource

Secondary

Resource

S. Korea follows another countrys

guidelines

(but no secondary resource exists)

OSQA-style platform for

WP:Med Administrators

Which diabetes clinical

guidelines are used by HCPs in

S. Korea?ADA (450 votes)

ACCE (10 votes)

No

Secondary

Resource

Exists
http://www.osqa.net/http://www.osqa.net/


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External Reference Management Tool

WikipediaReference

Management

Tool

(secondary

resources)

All Organizations

(including private)

Crowd

Consensus

Platform

Build into

Global

Central Hub


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Thank You

Wikipedia and Regional Standards of Care

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