a miniaturized version of the full report presented at APPSTERDAM #WWLL session on March 20th

1. Open Health Data:
Potential for Disruption
Eugene Borukhovich
Chief Executive Officer
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2. Open Health Data: Introduction
“Open health data encourages innovation &
entrepreneurship, improves transparency in our
healthcare system and most importantly can turn
healthcare into health for our digital citizens”
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Open Health Data: Select Quotes
“Open health data will unleash the power of people and
save the NHS from a crisis” - Tim Kelsey, Patients &
Information Director of NHS
“Educating them [entrepreneurs] about the data ... And
having them take the data and fusing it to their service
and platform, that's been very high-return for us” - Todd
Park
“Imagine we had a resource available that could stimulate
new innovations, a market worth tens of billions of euros,
and increase the transparency and governance of public
life” - Neelie Kroes
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4. Why Open Health Data?
Bridging the gap between governments & citizens
Improved transparency and accountability
Increased participation by digital health citizens
Informed decision making by empowered health consumers
Speed-up Scientific Research
Inspire mashups for social innovation
Generate economic activity surrounding new healthcare innovation
And most importantly.. enhance patient care
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5. Open Health Data: Challenges
Institutional Resistance to publish the data
Defending the data
Turning data against politicians?
Incomprehensible for laymen??
Lack of access to data
Government Agencies may have no data
Data locked in private institutions
Tracking results, impacts & longevity
Open data means unrestricted access
Tracking ecosystem output, consumption, social & economic data is hard
Idea: HealthCrunch.World API ?
Data
Focus on the local market
Drug Index, diagnoses, treatment codes differ across markets
Privacy and Security
Regulatory pressures, unclear De-identification regulations & routines
Empowering the empowered or available for everyone?
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6. Open Health Data: United States
Health Data Initiative (HDI)
Launched in 2010 by the Institute of Medicine (IOM) and the U.S. Department of Health and
Human Services (HHS)
HDI is a public-private collaboration that encourages innovators and entrepreneurs to utilize
HHS data to help improve health and health care
A growing inventory of public health data resources easily available and accessible at a
central location: HealthData.gov
Includes clinical care provider quality information, nationwide health service provider
directories, databases of the latest medical and scientific knowledge, consumer product
data, community health performance information, government spending data and much
more
In addition to publishing and promoting the availability of health data, HDI is preparing the
data for use by developers while protecting privacy and confidentiality
HDI is seeking to identify, encourage and accelerate the meaningful uses of the published
data by organizing forums, public competitions or hackathons
Policy Developments Support Openness
The Affordable Care Act, signed by President Obama in 2010, authorized HHS to release
new data sources
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7. Open Health Data: United States
HDI: Economic & Societal Impacts
More HHS health data and more usable formats
New innovative applications, products and services with use of health data
With improved data and innovative, new collaborative initiatives in disease prevention,
health promotion and measurement of health care quality and performance
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8. Open Health Data: United States
Archimeds IndiGO
IndiGO calculates and displays the patient risk of adverse events
Physician & Patient decision support tool
Patient powerful motivator tool
IndiGO combines a patient’s health information with a robust set of publicly available data,
such as national datasets, clinical trails (e.g. NIH diabetes trials) or epidemiological studies
(e.g. ARIC)
Economic & Social Impacts
IndiGO generates personalize preventative care for each patient
12,500 patients at Kaiser Permanente with 13% reduction in 5 year cardio risk, compared to
EHR and panel support tool alone
For every 1 million users, 1400 heart attacks and strokes averted annually
Open Data Sources
ex. Centers for Disease Control and Prevention (CDC) data such as National Health And
Nutrition Examination Survey (NHANES) and National Hospital Discharge Survey (NHDS)
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9. Open Health Data: United States
iTriage
Founded in 2008 by 2 emergency medicine physicians
Combines open health data with large database of symptoms
Includes directory of healthcare service providers
Helps healthcare consumers answer “What could be wrong?”
Helps healthcare consumers answer “Where should I go for treatment?”
Economic & Social Impacts
Over 7M consumers have downloaded iTriage as of September, 2012
Used about 3 million times each month
125K people have found Federally Qualified Health Centers
25K people have located mental health and substance abuse centers
iTriage has created ~90+ jobs
600+ hospital partners & practitioners providing better care to consumers
Open Data Sources
Health Resources and Services Administration (HRSA) - Federally Qualified Health Centers
Substance Abuse & Mental Health Services Administration (SAMHSA)- Mental Health
Treatment & Substance Abuse Facilities Locator
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10. Open Health Data: United Kingdom
Health & Social Care Act 2012
Included provisions for new approach of transparency, growth & open data
UK is expected to undergo a “data revolution” from April 2013
Safeguarding the future of NHS
Routine flows of data from primary care and secondary care
Empowering patients with information
Encouraging patient feedback
“Nobody has created a knowledge-based health system anywhere in the world. But in some respects
the UK is in a global leadership position, we’ve published more data than anywhere else,” Tim Kisley
(National Director for Patients and Information in the National Health Service) about Open Health
Data in UK (May, 2012)
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11. Open Health Data: United Kingdom
NHS Drug Spend Analysis
Partnership between Mastodon C, Open Healthcare UK, Ben Goldacre
Mastodon C housed at Open Data Institute (opened it’s doors week of Dec 8th)
Data analysis of UK prescription data
Patterns of expensive statin prescriptions
Economic & Social Impacts
2011-2012 NHS spent ~£400M
Potential NHS bill reduction of over ~£200M
Open Data Sources
NHS Public Prescription data
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12. Open Health Data: United Kingdom
Get the Right Treatment
Launched in 2010 by NHS Coventry
Support for Get The Right Treatment campaign
Location based GP, pharmacy & walk-in centers
Economic & Social Impacts
As of June 2011, the app was downloaded more then 1,000 times
Open Data Sources
NHS Choices datasets on data.gov.uk
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13. Open Health Data: the Netherlands
Data.overheid.nl
National Open Government Data portal
Lunched in September, 2011
Hack de Overheid (Hack the government)
Open Government Data initiative within the Open State Foundation
To foster transparency of the Dutch government
To encourage open data creation and usage to develop new innovative applications for
digital citizens
Hack de Overheid organizes range of activities such as open data workshops, mashups or
hackathons (Apps for Amsterdam, Apps for North-Holland and Apps for the Netherlands).
Open Zorg Data (openzorgdata.nl)
Open Health Data community of the Open State Foundation
Launched in ~November, 2011
To encourage health care innovation and entrepreneurship
To improve transparency, performance and affordability of the Dutch healthcare system
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14. Open Health Data: Our neighbors
US Health Data Initiative launched in 2010
http://www.healthdata.gov/
UK NHS over 539 datasets open (http://bit.ly/NHSopendata)
Belgium (~6 datasets - http://bit.ly/BEopendata)
Italy (~27 datasets - http://bit.ly/ITopendata)
Spain (~11 datasets - http://bit.ly/ESopendata)
France (~68 datasets - http://bit.ly/FRopendata)
Estonia (~20 datasets - http://bit.ly/EEopendata)
“We are in the midst of a great change
in how Knowledge is constructed” - Michael Nielsen

15. Open Health Data: the Netherlands
Open Data Initiatives supported by the Ministry of Health, Welfare & Sport
BIG-register (http://bit.ly/big-nl)
Provides information on over 400,000 registered caregivers
KiesBeter (Choose Better) (http://bit.ly/nl-kies)
Wide range of information on health and health care to help make better
choices
Includes comparison of health care costs and rankings of health care
providers and health insurers
Kosten van Ziekten (Cost of Illnesses) (http://bit.ly/nl-kosten)
“To determine the demands on health care resources caused by disease,
age and gender”
“To demonstrate the importance of the perspective on health expenditure
(national versus international)“
Regelhulp (http://bit.ly/nl-regel)
Offers personalized information on specific government aid programs
According to Be Informed report (2012), ~70,000 consultations/month
Jaarverslagenzorg (http://bit.ly/nl-digimv)
Performance of Youth & Pedagogic assistance Institutions
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16. Open Health Data Recommendation
•Get involved - it is your body and your health
•Join local chapters or grassroot organizations
•You don’t have to be a geek to do this, all disciplines are welcome:
• Technology
• Pharmacists
• Nurses
• Doctors
• Marketing
• UX/UI
• List goes on!
•Start a startup using local open data – why not?
Citizens
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17. Open Health Data: Act or be acted upon!
Questions?
Eugene Borukhovich
Chief Executive Officer
@HealthEugene
http://icgbv.com
EugeneB@icgbv.com
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