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Open Health Data: Potential for Disruption

Eugene BorukhovichChief Executive Officer

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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

“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

“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

“Open health data will unleash the power of people and save the NHS from a crisis” - Tim Kelsey, Patients & Information Director of NHS

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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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Open Health Data: Challenges

Institutional Resistance to publish the dataDefending the data

Turning data against politicians?

Incomprehensible for laymen??

Lack of access to dataGovernment Agencies may have no data

Data locked in private institutions

Tracking results, impacts & longevityOpen 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 SecurityRegulatory pressures, unclear De-identification regulations & routines

Empowering the empowered or available for everyone?

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Open Health Data: United StatesHealth 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 OpennessThe Affordable Care Act, signed by President Obama in 2010, authorized HHS to release

new data sources

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Open Health Data: United StatesHDI: 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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Archimeds IndiGOIndiGO 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 ImpactsIndiGO 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 Sourcesex. Centers for Disease Control and Prevention (CDC) data such as National Health And

Nutrition Examination Survey (NHANES) and National Hospital Discharge Survey (NHDS)

Open Health Data: United States

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Open Health Data: United StatesiTriage

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 ImpactsOver 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 SourcesHealth 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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Open Health Data: United KingdomHealth & 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 els

e,” 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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Open Health Data: United KingdomNHS 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 Impacts2011-2012 NHS spent ~£400M

Potential NHS bill reduction of over ~£200M

Open Data SourcesNHS Public Prescription data

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Open Health Data: United KingdomGet 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 ImpactsAs of June 2011, the app was downloaded more then 1,000 times

Open Data SourcesNHS Choices datasets on data.gov.uk

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Open Health Data: the NetherlandsData.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

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

Open Health Data: Our neighbors

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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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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?

Citizens16

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Questions?

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Eugene BorukhovichChief Executive Officer

@HealthEugenehttp://icgbv.comEugeneB@icgbv.com

Open Health Data: Act or be acted upon!