The Wisdom of Crowds The Wisdom of Crowds and Social Innovation in the and Social Innovation in the Rare Disease Community Rare Disease Community A presentation to: A presentation to: EURORDIS EURORDIS May 9, 2009 May 9, 2009
Three points I will make Three points I will make • The wisdom of crowds means that patients will means that patients will look for answers from each and will expect to be look for answers from each and will expect to be able to collaboratively create new answers where able to collaboratively create new answers where good ones can’t be found • Social technologies offer rare disease groups offer rare disease groups exceptional tools perfectly suited to the challenges exceptional tools perfectly suited to the challenges of building powerful networks to serve the needs of of building powerful networks to serve the needs of people dealing with orphan diseases people dealing with orphan diseases • Protecting the commons Protecting the commons can only happen if missiondriven patient groups are able to ensure driven patient groups are able to ensure that social networks reflect a commitment to the that social networks reflect a commitment to the public good, as opposed to commercial gain public good, as opposed to commercial gain
The Wisdom of Crowds The Wisdom of Crowds Changes Who the Experts Are Changes Who the Experts Are
The Wisdom of Crowds The Wisdom of Crowds A Strategy for Better Decisions A Strategy for Better Decisions An intelligent group figures out how to An intelligent group figures out how to use mechanisms to aggregate and use mechanisms to aggregate and produce collective judgments that produce collective judgments that represent not what any one person in represent not what any one person in the group thinks but rather, in some the group thinks but rather, in some sense, what they all think. sense, what they all think. James Surowiecki
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?
The Wisdom of Patients The Wisdom of Patients Creating and sharing knowhow Creating and sharing knowhow The . . . wisdom of crowds has begun to The . . . wisdom of crowds has begun to change consumers’ relationships with change consumers’ relationships with their traditional touchpoints in health: their traditional touchpoints in health: physicians, health plans, suppliers, and physicians, health plans, suppliers, and pharmacists. By sharing ideas, pharmacists. By sharing ideas, discussing symptoms, and debating discussing symptoms, and debating treatment options together, all of these treatment options together, all of these stakeholders gain knowledge that can stakeholders gain knowledge that can ultimately improve patient care. ultimately improve patient care. Jane SarasohnKahn
The rise of the expert patient The rise of the expert patient Reducing the asymmetry of information Reducing the asymmetry of information • The proliferation of Internet search and social media have The proliferation of Internet search and social media have given rise the of the expert health consumer – the expert given rise the of the expert health consumer patient – who has become equipped with a robust who has become equipped with a robust understanding of their condition, or that of a loved one understanding of their condition, or that of a loved one • Today’s generation of patient advocates may shun traditional Today’s generation of patient advocates may shun traditional “bricks and mortar” approaches of organizational development “bricks and mortar” approaches of organizational development and instead build largely even completely virtual groups and instead build largely even completely virtual groups • A growing number of “patient opinion leaders” “patient opinion leaders” have gained recognition across disease areas based on widespread recognition across disease areas based on widespread readership of their personal blogs readership of their personal blogs
Social Innovation Promises Social Innovation Promises Patient Empowerment Patient Empowerment
What makes media social? What makes media social? The Internet as a Platform • Social media tools are transforming the tools are transforming the healthcare sector globally and is healthcare sector globally and is increasingly on the minds of policymakers, drug companies, patient policymakers, drug companies, patient groups and the media • These social media are defined by so These social media are defined by so called “user generated content” “user generated content” (UGC) which is made by users for other users which is made by users for other users • The technologies of social innovation social innovation include social networks, search engines, include social networks, search engines, wikis, blogs, image/video sharing, micro wikis, blogs, image/video sharing, micro blogs and mobile devices
Social media environment Social media environment
The reach of the Long Tail The reach of the Long Tail Social technologies support niche offerings: Social technologies support niche offerings: • 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 The banner of a movement Creating participatory healthcare in the U.S. Creating participatory healthcare in the U.S. Health 2.0 is participatory healthcare. The combination of content Health 2.0 is participatory healthcare. The combination of content and community enables the patient to be an active partner in their and community enables the patient to be an active partner in their own health care and the citizen to be an equal partner in own health care and the citizen to be an equal partner in improving the health system. Crowdsourced by Ted Eytan, MD http://www.tedeytan.com Crowdsourced by Ted Eytan, MD Empowering the digital citizen in the EU Empowering the digital citizen in the EU Patient 2.0 Empowerment is the active participation of the citizen Patient 2.0 Empowerment is the active participation of the citizen in his or her health and care pathway with the interactive use of in his or her health and care pathway with the interactive use of Information and Communication Technologies. Information and Communication Technologies. Lodewick Bos, et al. www.icmcc.org/pdf/ICMCCSWWS08.pdf www.icmcc.org/pdf/ICMCCSWWS08.pdf 15
Implications for patient groups Implications for patient groups • Health records: Patient access to digital health data (EHR/PHR) as Patient access to digital health data (EHR/PHR) as information platform for health empowerment information platform for health empowerment • Health information: Wise crowds assemble folksonomies Wise crowds assemble folksonomies – community assembled and mediated databases community assembled and mediated databases • Disease epidemiology: Social technologies create new kinds of Social technologies create new kinds of participatory registries and data collection platforms participatory registries and data collection platforms • Patient support: Proliferation of social network Proliferation of social networkenabled peer support opportunities and resources • Drug and device research: Emergence of social Emergence of socialtechnology enabled trial recruitment networks and matching tools enabled trial recruitment networks and matching tools • Patient advocacy: Adoption of collaborative tools to create new Adoption of collaborative tools to create new mechanisms for patient and cause advocacy mechanisms for patient and cause advocacy • Cause affinity: Deployment and popularity of “disease affinity Deployment and popularity of “disease affinity cause” features within social networks cause” features within social networks
Protecting the Commons Protecting the Commons Becomes an Imperative Becomes an Imperative
Evolve at your own risk Evolve at your own risk
The rise of digital democracy? The rise of digital democracy? Do You Own Do You Own Or Does Facebook Own Facebook Own You? You? (Answer: Facebook owns you.)
Preserving the commons Preserving the commons
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