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The Wisdom of Crowds and Social Innovation in the Rare Disease Community

A presentation to: EURORDIS May 9, 2009

The Wisdom of Crowds and Social Innovation in the Rare Disease Community

A presentation to: EURORDIS May 9, 2009

Three points I will make

• The wisdom of crowds means that patients will

look for answers from each and will expect to be able to collaboratively create new answers where good ones can’t be found

• Social technologies offer rare disease groups

exceptional tools perfectly suited to the challenges

• f building powerful networks to serve the needs of

people dealing with orphan diseases

• Protecting the commons

mission­driven patient groups are able to ensure that social networks reflect a commitment to the public good, as opposed to commercial gain

Three points I will make

means that patients will look for answers from each and will expect to be able to collaboratively create new answers where

• ffer rare disease groups

exceptional tools perfectly suited to the challenges

• f building powerful networks to serve the needs of

people dealing with orphan diseases Protecting the commons can only happen if driven patient groups are able to ensure that social networks reflect a commitment to the public good, as opposed to commercial gain

The Wisdom of Crowds Changes Who the Experts Are The Wisdom of Crowds Changes Who the Experts Are

A Strategy for Better Decisions

An intelligent group figures out how to use mechanisms to aggregate and produce collective judgments that represent not what any one person in the group thinks but rather, in some sense, what they all think.

The Wisdom of Crowds

A Strategy for Better Decisions

An intelligent group figures out how to use mechanisms to aggregate and produce collective judgments that represent not what any one person in the group thinks but rather, in some sense, what they all think.

James Surowiecki

The Wisdom of Crowds

A Tweet about Twitter A Tweet about Twitter

From Wikipedia:

Twitter is a free social networking and micro­ blogging service that enables its users to send and read other users' updates, known as tweets.

http://en.wikipedia.org/wiki/Twitter

The revolution? The revolution?

Where is Moldova? Where is Moldova?

Creating and sharing knowhow

The . . . wisdom of crowds has begun to change consumers’ relationships with their traditional touchpoints in health: physicians, health plans, suppliers, and

• pharmacists. By sharing ideas,

discussing symptoms, and debating treatment options together, all of these stakeholders gain knowledge that can ultimately improve patient care.

The Wisdom of Patients

Creating and sharing knowhow

The . . . wisdom of crowds has begun to change consumers’ relationships with their traditional touchpoints in health: physicians, health plans, suppliers, and

• pharmacists. By sharing ideas,

discussing symptoms, and debating treatment options together, all of these stakeholders gain knowledge that can ultimately improve patient care.

Jane Sarasohn­Kahn

The Wisdom of Patients

The rise of the expert patient

Reducing the asymmetry of information

• The proliferation of Internet search and social media have

given rise the of the expert health consumer patient – who has become equipped with a robust understanding of their condition, or that of a loved one

• Today’s generation of patient advocates may shun traditional

“bricks and mortar” approaches of organizational development and instead build largely even completely virtual groups

• A growing number of “patient opinion leaders”

recognition across disease areas based on widespread readership of their personal blogs

The rise of the expert patient

Reducing the asymmetry of information

The proliferation of Internet search and social media have given rise the of the expert health consumer – the expert who has become equipped with a robust understanding of their condition, or that of a loved one Today’s generation of patient advocates may shun traditional “bricks and mortar” approaches of organizational development and instead build largely even completely virtual groups “patient opinion leaders” have gained recognition across disease areas based on widespread readership of their personal blogs

Social Innovation Promises Patient Empowerment Social Innovation Promises Patient Empowerment

The Internet as a Platform

• Social media tools are transforming the

healthcare sector globally and is increasingly on the minds of policymakers, drug companies, patient groups and the media

• These social media are defined by so

called “user generated content” which is made by users for other users

• The technologies of social innovation

include social networks, search engines, wikis, blogs, image/video sharing, micro blogs and mobile devices

What makes media social?

tools are transforming the healthcare sector globally and is policymakers, drug companies, patient These social media are defined by so­ “user generated content” (UGC) which is made by users for other users social innovation include social networks, search engines, wikis, blogs, image/video sharing, micro­

What makes media social?

Social media environment Social media environment

Social technologies support niche offerings:

The reach of the Long Tail

• Social technologies support niche offerings:

The reach of the Long Tail

Internet merchants such as Amazon.com cater to a broad range of divergent tastes by selling a few each of a huge number of items The Long Tail also explains how the Internet serves as a platform to enable rare disease groups to build networks and reach patients

You look familiar . . .

“

You look familiar . . .

”

The banner of a movement

Creating participatory healthcare in the U.S.

Health 2.0 is participatory healthcare. The combination of content and community enables the patient to be an active partner in their

• wn health care and the citizen to be an equal partner in

improving the health system.

Crowdsourced by Ted Eytan, MD

Empowering the digital citizen in the EU

Patient 2.0 Empowerment is the active participation of the citizen in his or her health and care pathway with the interactive use of Information and Communication Technologies.

Lodewick Bos, et al. www.icmcc.org/pdf/ICMCCSWWS08.pdf

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The banner of a movement

Creating participatory healthcare in the U.S.

Health 2.0 is participatory healthcare. The combination of content and community enables the patient to be an active partner in their

• wn health care and the citizen to be an equal partner in

Crowdsourced by Ted Eytan, MD http://www.tedeytan.com

Empowering the digital citizen in the EU

Patient 2.0 Empowerment is the active participation of the citizen in his or her health and care pathway with the interactive use of Information and Communication Technologies.

www.icmcc.org/pdf/ICMCCSWWS08.pdf

• Health records: Patient access to digital health data (EHR/PHR) as

information platform for health empowerment

• Health information: Wise crowds assemble folksonomies

community assembled and mediated databases

• Disease epidemiology: Social technologies create new kinds of

participatory registries and data collection platforms

• Patient support: Proliferation of social network

support opportunities and resources

• Drug and device research: Emergence of social

enabled trial recruitment networks and matching tools

• Patient advocacy: Adoption of collaborative tools to create new

mechanisms for patient and cause advocacy

• Cause affinity: Deployment and popularity of “disease affinity

cause” features within social networks

Implications for patient groups

Patient access to digital health data (EHR/PHR) as information platform for health empowerment Wise crowds assemble folksonomies – community assembled and mediated databases Social technologies create new kinds of participatory registries and data collection platforms Proliferation of social network­enabled peer Emergence of social­technology enabled trial recruitment networks and matching tools Adoption of collaborative tools to create new mechanisms for patient and cause advocacy Deployment and popularity of “disease affinity cause” features within social networks

Implications for patient groups

Protecting the Commons Becomes an Imperative Protecting the Commons Becomes an Imperative

Evolve at your own risk Evolve at your own risk

Do You Own Facebook Own You? The rise of digital democracy? Do You Own Or Does Facebook Own You? The rise of digital democracy?

(Answer: Facebook owns you.)

Preserving the commons Preserving the commons