CitiZen: The Tao of Now Jason Bonander, Associate Director (Acting) Strategy and Program Management CDC | National Center for Public Health Informatics 2 April 2009 Presentation to the AMIA Consumer Health Informatics Working Group

Context Businesses of earlier centuries thrived on command and control paradigms. 21 st century enterprises depend on the ideas and initiatives of many. They succeed by distributing decision-making authority, incentives, and information tools to the edges. [For health there will be a need to embrace] consumers as key producers, users and potentially managers of clinical data and partners in the research process. - Carol Diamond, Markle Foundation

Businesses of earlier centuries thrived on command and control paradigms. 21 st century enterprises depend on the ideas and initiatives of many. They succeed by distributing decision-making authority, incentives, and information tools to the edges. [For health there will be a need to embrace] consumers as key producers, users and potentially managers of clinical data and partners in the research process.

- Carol Diamond, Markle Foundation

Interesting Times Dataverse Amt of info in a daily NYT more than a typical 19th Century person had access to in a lifetime Corporations likely know more about us than we know about ourselves The entire archived contents of the Internet equals ~ 3 petabytes; Google processes over 20 petabytes of data per day 2004, Bruce Sterling coined the term “spime” - the idea that all objects, in the not too distant future, will carry with them their geo-temporal history

Dataverse

Amt of info in a daily NYT more than a typical 19th Century person had access to in a lifetime

Corporations likely know more about us than we know about ourselves

The entire archived contents of the Internet equals ~ 3 petabytes; Google processes over 20 petabytes of data per day

2004, Bruce Sterling coined the term “spime” - the idea that all objects, in the not too distant future, will carry with them their geo-temporal history

Interesting Times Sociality Unprecedented ability, afforded by technology, to extend our sociality Unprecedented amount of information (health and otherwise) being shared, traded, made publicly available 3 out of 4 Americans willing to share personal information to aid public officials, assuming privacy safeguards Hundreds of millions of daily users of SN resources Avatar health coaches

Sociality

Unprecedented ability, afforded by technology, to extend our sociality

Unprecedented amount of information (health and otherwise) being shared, traded, made publicly available

3 out of 4 Americans willing to share personal information to aid public officials, assuming privacy safeguards

Hundreds of millions of daily users of SN resources

Avatar health coaches

Interesting Times Public Health In 2002, Gunther Eisenbach coined the terms “infoveillance” and “infodemiology” as a way to begin to scientifically frame how some forms of Web behavior can be understood 11.11.08 GoogleFlu - potentially picked up the start of the flu season a few weeks earlier than traditional public health surveillance Healthy People 2020: visions for personalized population health Public health GRiD 2009 Cochrane review of evidence-base for interactive health communication systems (IHCS) -- very strong

Public Health

In 2002, Gunther Eisenbach coined the terms “infoveillance” and “infodemiology” as a way to begin to scientifically frame how some forms of Web behavior can be understood

11.11.08 GoogleFlu - potentially picked up the start of the flu season a few weeks earlier than traditional public health surveillance

Healthy People 2020: visions for personalized population health

Public health GRiD

2009 Cochrane review of evidence-base for interactive health communication systems (IHCS) -- very strong

What now? The planets are aligned Greater need now than ever before Accreting evidence base Growing # of conferences (Medicine 2.0 - Toronto; Health 2.0 - SFO; eHealth - Istanbul) Enormous opportunity for consumer health informatics Thoughts from public health 

The planets are aligned

Greater need now than ever before

Accreting evidence base

Growing # of conferences (Medicine 2.0 - Toronto; Health 2.0 - SFO; eHealth - Istanbul)

Enormous opportunity for consumer health informatics

Thoughts from public health 

Citizen Sentinels Question: How do we enable citizens to be public health’s eyes and ears? Spectrum of health data and situations being collected or monitored (currently or potentially) growing rapidly Socio-technical intersections: Personal health records, Wii devices, social networking sites, mobile technology, body area networks, online behavior, disintermediation/apomediation To explore ... Opt-in opportunity for all public health survey participants to have the data collected from them “returned” to a personal health platform with an expanded sentinel toolkit Incentives, aside from altruism, that shape willingness to share data for the public good The possibilities of twitterveillance

Question: How do we enable citizens to be public health’s eyes and ears?

Spectrum of health data and situations being collected or monitored (currently or potentially) growing rapidly

Socio-technical intersections: Personal health records, Wii devices, social networking sites, mobile technology, body area networks, online behavior, disintermediation/apomediation

To explore ...

Opt-in opportunity for all public health survey participants to have the data collected from them “returned” to a personal health platform with an expanded sentinel toolkit

Incentives, aside from altruism, that shape willingness to share data for the public good

The possibilities of twitterveillance

Citizen Health Networks Question: How to I integrate the health around me and use it to connect me to others, services, and/or programs that can further my health, the health of those I’m connected to and the health of my community? Data trails, consumption patterns, social networks, personal/ social/communal needs and desires Socio-technical intersections: Health information exchanges, social networking sites, mobile technology, online behavior, community services, local/national interest groups/movements To explore ... Using computational methods + epidemiology to understand public online health behavior with an eye toward intervention delivery Persistent personal health agents that aid in the creation and maintenance of a personal health home

Question: How to I integrate the health around me and use it to connect me to others, services, and/or programs that can further my health, the health of those I’m connected to and the health of my community?

Data trails, consumption patterns, social networks, personal/ social/communal needs and desires

Socio-technical intersections: Health information exchanges, social networking sites, mobile technology, online behavior, community services, local/national interest groups/movements

To explore ...

Using computational methods + epidemiology to understand public online health behavior with an eye toward intervention delivery

Persistent personal health agents that aid in the creation and maintenance of a personal health home

Citizen Scientists Question: What’s the next generation of social data analytic tools that increase citizen’s engagement with and an understanding of public health data? Spectrum of health data being collected or monitored and increasingly available for public use Socio-technical intersections: “A new kind of big science”, NYT, 01.13.09; Social data analysis, ACM/CHI, 04.06.08; Many eyes; 23andMe; Patients Like Me; FOIA; accountability/transparency To explore ... Health risk assessments on visual and analytic steroids Citizen friendly health data mining interfaces and services/data marts on a public health GRiD

Question: What’s the next generation of social data analytic tools that increase citizen’s engagement with and an understanding of public health data?

Spectrum of health data being collected or monitored and increasingly available for public use

Socio-technical intersections: “A new kind of big science”, NYT, 01.13.09; Social data analysis, ACM/CHI, 04.06.08; Many eyes; 23andMe; Patients Like Me; FOIA; accountability/transparency

To explore ...

Health risk assessments on visual and analytic steroids

Citizen friendly health data mining interfaces and services/data marts on a public health GRiD

Discussion