Patientslikeme:

An Analysis of Medicine 2.0

Tashia Sutantio and Jessica Wallner

PLM

Transp

are

ncy

“No surprises. Our members

shouldn't be surprised by anything

we do. Our goal is to disclose what

we do with members' information,

how we make money, as well as all of

our partnerships on the site.”

Structure of the Company

Finding Company info

No Ads

Where does info go?

Use

r Openness

“We believe privacy has

hindered the effective

development of new treatments

and shared understanding of

how to manage disease.”

Philosophy of Openness

Sharing Information

Privacy -

Anonymity/Pseudonymity

User Control

Know

ledge

Sharin

g“We believe that sharing health

information is good. Why?

 Because sharing and openness

will drive massive improvement

in healthcare.”

Data to Information to Knowledge

Patients provide data to research

companies

What do patients get in return?

Sharing information

Where is the medical professional

knowledge?

Medic

ine 2

.0

in c

onte

xt

Professional Medical

Information SitesMedicinenet WebMD ShareCare Mayoclinic

Medic

ine 2

.0

in c

onte

xt

Medical Research SitesOrganized Wisdom Patientslikeme

Health Management

SitesGoogle HealthMicrosoft Health Vault

SugarStats

Medic

ine 2

.0

in c

onte

xt

Virtual Social Networks/Support GroupsHealthChapter

MDJunctionDaily Strength

Feature

ModificationsPatientsLikeMe

PROBLEMS:

Conflicts of interest

Profit vs. Openness, Transparency, and

Knowledge Sharing

PROPOSAL:

Propose split between PatientsLikeMe

as a non-profit organization focused

on knowledge sharing and for-profit

data sharing company

Close PatientsLikeMe to members only

Business Model

PatientsLikeMeHome Page:

Become a Member?

Free MemberProvides basic information

and user has access to condition pages and forums, but not as a

participant

Paid Member- Low Fee - $5-$20 per

year- Full access to website

Would you like to make your data available to the for-profit company in the interest of medical research and

trial information?

NoYes, I want my data sold for medical

research. User will have access to services provided by company such as

drug trial info, etc.

Why Pay? Access to community with similar

conditions, resources about symptoms and treatments, ability to ask questions of

medical professionals, increased privacy of

information

Medical Data Collection Company

Provides service of turning data into graphs and charts in exchange for voluntary

data

Impro

ved

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are

ncy

OPTION to give data

to for-profit company–

when creating a profile,

you are presented with an

open disclosure and asked

if you want to share your

dataAdd prominent tab for

About Us - includes

affiliations and interests of

the PLM Organization and

For-profit Company

Exa

mple

of

Transp

are

ncy

Impro

ved

Openness

Protect Information - PLM

is closed to all non-members

User Autonomy - can add

treatments, symptoms,

forums, etc.Condition Resource Pages – All users can add

condition pages and paid

members can add links to

resources about the condition, including Forum

page and free members can

benefit from collective

knowledge.

Exa

mple

of

Openness

Impro

ved

Know

ledge S

hari

ng

Share Data – patient to

Patient sharing of data as well

as the opportunity to share

data for medical research

More Communication

Tools - Patient to Patient

personal information and

knowledge shared via

personal messaging, chat,

forums, etc.Q&A Page – A few chosen

medical professionals, with

available credentials, each

have a blog where users ask

questions

Exa

mple

of

Know

ledge S

hari

ng

To C

oncl

ude…

Our own transparency:

Preliminary proposalOur aim is to focus on

values in modification, but

without detailed business

information we cannot say

if it would be profitable

Lack of statistical, empirical data