Open Health Data: Potential for Disruption


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

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  • Spot inequalities in provision and to advocate for change
  • Intelectual Property - who owns the data?
  • Open Health Data: Potential for Disruption

    1. 1. Open Health Data:Potential for Disruption Eugene Borukhovich Chief Executive Officer 1 1
    2. 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” 2 2
    3. 3. 4Open Health Data: Select Quotes“Open health data will unleash the power of people andsave the NHS from a crisis” - Tim Kelsey, Patients &Information Director of NHS“Educating them [entrepreneurs] about the data ... Andhaving them take the data and fusing it to their serviceand platform, thats been very high-return for us” - ToddPark“Imagine we had a resource available that could stimulatenew innovations, a market worth tens of billions of euros,and increase the transparency and governance of publiclife” - Neelie Kroes 3 3
    4. 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 4
    5. 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? 5
    6. 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: 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 6
    7. 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 7
    8. 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) 8
    9. 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 9
    10. 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 respectsthe 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 HealthData in UK (May, 2012) 10
    11. 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 11
    12. 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 12
    13. 13. Open Health Data: the Netherlands 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 ( 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 23
    14. 14. Open Health Data: Our neighborsUS Health Data Initiative launched in 2010UK NHS over 539 datasets open (Belgium (~6 datasets -Italy (~27 datasets -Spain (~11 datasets -France (~68 datasets -Estonia (~20 datasets - “We are in the midst of a great change in how Knowledge is constructed” - Michael Nielsen
    15. 15. Open Health Data: the NetherlandsOpen Data Initiatives supported by the Ministry of Health, Welfare & Sport BIG-register ( Provides information on over 400,000 registered caregivers KiesBeter (Choose Better) ( 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) ( “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  ( Offers personalized information on specific government aid programs According to Be Informed report (2012), ~70,000 consultations/month Jaarverslagenzorg ( Performance of Youth & Pedagogic assistance Institutions 23
    16. 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 1628
    17. 17. Open Health Data: Act or be acted upon! Questions? Eugene Borukhovich Chief Executive Officer @HealthEugene 1728