Open Health Data Qualitative Overview

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This qualitative overview of the Open Health Data initiatives is meant to showcase the importance of open health data, social as well as economic impacts across US, UK and a select set of Western …

This qualitative overview of the Open Health Data initiatives is meant to showcase the importance of open health data, social as well as economic impacts across US, UK and a select set of Western European countries. This overview is not meant to be a comprehensive report on all the global initiatives, funding models and tracking of open health data. There are tremendous efforts across the globe to change our global healthcare system and we believe that open health data is one of the keys to bridge the gap between digital citizens & governments. Also, please note that if your country, initiative or product was not mentioned, it is in no way meant to diminish the impact of the efforts. Please feel free to share, discuss and contribute to the list of ongoing efforts and initiatives on one of our global communities or on openhealthdata.org.

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  • Spot inequalities in provision and to advocate for change
  • Intelectual Property - who owns the data?
  • In addition to CMS, previously found info on Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC) but cant find the source.
  • Additional information Data.gouv.fr - During the first year of existence, 750.000 visitors have downloaded data 394.000 times Etalab is coordinating the French adminsitratos to enhable free and easy reuse of publis service information. Committed to further open data in France: Intensifying the opening of public data because of the innovation, social and economic potential, and encouraging the free re-use of this data. Creating synergy with interministerial directorate for information systems and communication (DSI) to improve the quality and usability of public data Contribute to the development of tranparancy and open government in the context of the modernisations of public administration, for example by allowing people to contribute to policy evaluations through the usage and analysis of open data
  • See Links on “ In July 2012, Forumi Sante received a notice from CNAMTS to cease publishing its medical fee comparison data and linking to data on Ameli.fr ” http://epsiplatform.eu/content/row-over-medical-fee-comparison-data http://www.politis.fr/Quand-Ameli-attaque-la-Fourmi,19885.html http://www.journaldunet.com/web-tech/start-up/fourmi-sante-honoraires-0912.shtml Forumi Sante reaction : http://www.huffingtonpost.fr/barbara-ngouyombo/open-data-tarifs-sante-assurance-maladie_b_2004495.html Explanation CNAMTS : http://www.slate.fr/lien/61395/securite-sociale-fourmi-sante-tarifs
  • I dont think its not the health data here (but its a health-related app)..
  • See links: Barbara N ’Gouyombo (http://www.huffingtonpost.fr/barbara-ngouyombo/open-data-tarifs-sante-assurance-maladie_b_2004495.html) ( In addition to describing Forumi Sante case, Barbara (CEO of Forumi Sante) mentioned that ATIH ( French Technical Agency of Information on Hospitals - see http://www.atih.sante.fr ),owns a database of fees in private clinics, data from the Health Data Institute (SDI), which are only accessible to the founding members.) Marisol Touraine (http://www.mutualite.fr/L-actualite/Evenements/Congres/Discours-d-ouverture-de-Marisol-Touraine) Open Data difficulties in France (including additional examples of closing open health data initiatives : Densistedegarde.net) : http://owni.fr/2012/11/06/et-si-cetait-la-faim-de-l-open-data/
  • http://blog.okfn.org/2012/07/04/en-boca-cerrada-open-data-in-catalunya-today/
  • Open Data Efforts in Spain: http://www.access-info.org/en/spain-coalicion-pro-acceso/307-si-saben-pero-no-contestan- http://www.access-info.org/en/open-government-data/302-spain-is-a-world-leader-in-open-data-says-who http://blog.okfn.org/2012/07/04/en-boca-cerrada-open-data-in-catalunya-today/ Jual Oliva, El Mundo: and well, he mentioned that only Catalonia published its hospital indicators but I did see some indicators in Basque Country datasets too... So didnt include that (for now) http://www.elmundo.es/elmundosalud/2012/11/20/noticias/1353437329.html “ Es difícil saber si existen demasiados hospitales, precisamente por esa falta de transparencia . Sólo una comunidad, Cataluña, hizo públicos en julio de 2012 sus datos sobre resultados de calidad por centros ; en qué hospitales los tiempos de espera son más reducidos, cuál tiene mayor tasa de cesáreas o de infecciones, menor riesgo de reingreso... Pero eso es una excepción. Todas las comunidades tienen los datos, pero si no los hacen públicos es por una cuestión política . Y conocerlos no es una cuestión baladí. Algunos países, por ejemplo, aplican unas normas muy explícitas para que un hospital deba tener un volumen mínimo de cirugías cardiacas para poder tener ese servicio, por ejemplo; es una cuestión de economía de escalas, porque los equipos que operan mucho tienen mejores resultados. ”
  • Build cross-country comparisons?

Transcript

  • 1. Join our communities http://openhealthdata.orgEugene Borukhovich Katarzyna RabczukChief Executive Officer, ICG Healthcare Research Associate, ICG@HealthEugene @krabczuk 1 1
  • 2. Open Health Data: About the reportThis qualitative overview of the Open Health Data initiatives is meant to showcasethe importance of open health data, social as well as economic impacts across US,UK and a select set of Western European countries. This overview is not meant tobe a comprehensive report on all the global initiatives, funding models and trackingof open health data. There are tremendous efforts across the globe to change ourglobal healthcare system and we believe that open health data is one of the keys tobridge the gap between digital citizens & governments. Also, please note that if yourcountry, initiative or product was not mentioned, it is in no way meant to diminish theimpact of the efforts. Please feel free to share, discuss and contribute to the list ofongoing efforts and initiatives on one of our global communities or onopenhealthdata.org. “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. 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. 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. 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. 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 6
  • 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. Open Health Data: United States Health Systems Measurement Project (HSMP) Web-based tool launched in 2012 by the U.S. Department of Health and Human Services (HHS) Tracks government data on critical U.S. health system indicators 10 dimensions: access to care, cost and affordability, coverage, health information technology, innovation, population health, prevention, quality, vulnerable population & health care workforce Combines data from multiple sources Allows to compare trends across measures and levels Economic & Societal Impacts “Ensuring all Americans have access to these data is an important way to make our health care system more open and transparent.” Kathleen Sebelius, Health and Human Services Secretary Open Data SourcesData provided by the following agencies: Agency for Healthcare Research and Quality (AHRQ) Health Resources & Services Administration (HRSA) Centers for Disease Control and Prevention (CDC) Assistant Secretary for Planning and Evaluation (ASPE) Centers for Medicare and Medicaid (CMS) Office of the National Coordinator (ONC) Food and Drug Administration (FDA) as well as Substance Abuse and Mental Health Services Administration (SAMHSA) 8
  • 9. Open Health Data: United States BlueButton Initiative Effort to accelerate patient access to their health records Initiated in August 2010 by the U.S.Department of Veterans Affairs Idea expanded to public and private sector UnitedHealthcare adopted support in Sept, 2011 and 500K patients use it Aetna went live in Sept, 2011 and available to 36.5M people IBlueButton app was created by Hummetrix to enable mobile HIE solution BlueButton Record Download is now available on MyMedicare.gov Economic & Social Impacts According to iBlueButton Sources, over 150M users in June, 2012 Open Data Sources v29 ICD-9-CM code (15K diagnoses codes; 3900 procedure codes) FDA National Drug Code Directory (55,000 NDC codes) CMS NPI registry (3.7M NPI codes) National Library of Medicine RxNorm NIH Medline Plus Connect (1200 Drug Information Records) Department of Veteran Affairs Drug File-Reference (46,000 NUI concepts) CMS UB04 HCPCCS codes (10,000 codes) 9
  • 10. 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) 10
  • 11. 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 11
  • 12. Open Health Data: United States Vitals Founded in 2008, Vitals helps patients make the right healthcare choices Key features: search for a doctor, book an appointment and prepare for the visit Contains1.4 billion data points from 17,000 data sources, 14 million doctor affiliations, 2.4 million medical publications, 1 million patient ratings, 830,000 active, licensed doctor profiles, and 400,000 medical expertise categories Supported by a mobile app Economic & Social Impacts As of 2011,100 M patients accessed the Vitals information set to make informed choices As data has gotten richer, its use by patients has grown. Currently, over ~10 million visitors per month Inc 500, #47 Fastest Growing Company, 2012 Kiplinger, Best of Everything, 2011 Open Data Sources A wide range of data sets both public and private Ex. Data from Centers for Medicare & Medicaid Services (CMS) 12
  • 13. Open Health Data: United States 100Plus Mobile app that assesses behavior and spur healthier living habits To motivate people to take small healthy steps to change daily habits and improve their health Gamification for health “Because health doesnt have to be hard.” Economic & Social Impacts •100Proof Experiment app was developed in early 2012 •Track drinking and partying ways •About 7,000 users through the app in just over 2 days •100Plus beta app launched•Open Data Sources Combination of public (CDC’s Behavioral Risk Factor Surveillance System and National Health & Nutrition Examination Survey) and private data (Practice Fusion EMR) 13
  • 14. 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) 14
  • 15. 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 15
  • 16. Open Health Data: United Kingdom•Pocket Health •App developed in public/private partnership NHS/CSC •Finding NHS Services & improving decision making •Offers number of features including ICE (in case of emergency)•Economic & Social Impacts •February 2012, app reached #2 spot on UK iTunes store•Open Data Sources •NHSChoices datasets on data.gov.uk 16
  • 17. 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 17
  • 18. Open Health Data: Austria•Data.wien.gv.at • The first Open Government Data portal of a public administration in Austria • Launched in May, 2011•Data.gv.at • National OGD portal launched in April, 2012 • Aims to create data awareness and increase data literacy • Aggregates all the local and regional datasets in Austria, such as portals of the city of Vienna, Linz, Graz or the state Tirol. • Currently, 23 health datasets such as lists of ambulances or hospitals•Cooperation OGD Austria • Launched in July, 2011 • Brings together federal state, provinces, cities and municipalities to set common standards for OGD in Austria and develop conditions to the benefit of all 18
  • 19. Open Health Data: Austria•Hospitals Vienna (Spitäler Wien) •Mobile app that allows to search for hospitals in Vienna•Economic & Social Impacts •No information found•Open Data Sources • Hospital Locations (Krankenhäuser – Standorte)ondata.wien.gv.at 19
  • 20. Open Health Data: Belgium•Data.gov.be •National Flemish Open Government Data portal • Launched in 2011 •Currently, 7 health datasets such as Flemish healthcare institutions or retirement and nursing homes 20
  • 21. Open Health Data: Belgium•Kadee •Prototype developed by BitsofLove during Apps for Ghent competition in 2011 •Aimed at parents walking with their children •Kadee provides online information about events and places for kids •It also provides information about the nearest doctors or pharmacists•Economic & Social Impacts •Prototype developed in 2011. No further information found•Open Data Sources • Ghent Data (public toilets, playgrounds, Doctor & Pharmacy of guard) on data.gent.be 21
  • 22. Open Health Data: Belgium•Dokter in Gent •Developed by Cocoaheads community during the Apps for Ghent 2011, •App that allows to find the nearest doctor in Ghent•Economic & Social Impacts •No information found on app availability nor usage•Open Data Sources • Ghent Data on data.gent.be 22
  • 23. Open Health Data: France•Etalab •French government Open Data initiative •Launched in July, 2011 •Committed to ensure continuity and quality of the Open Data movement in France •Data.gouv.fr: national Open Government Data portal launched by Etalab in December, 2011 •DataConnexions: community aimed at encouraging innovation based on Open Data and public sector information reuse; launched by Etalab in February, 2012 23
  • 24. Open Health Data: France•Forumi Sante •Portal publishing information about health care products and services • Stimulates informed decision making •Since May 2012, Forumi Sante made possible to compare between medical service providers and regions, including medical rates linked to the Database of the French National Health Insurance Agency (Caisse Nationale d’Assurance Maladie des Travailleurs Salariés – CNAMTS)•Economic & Social Impacts •Winner of the first Dataconnexions Open Data contest in May, 2012•Open Data Sources •French National Health Insurance Agency (CNAMTS) on Ameli.fr •In July 2012, Forumi Sante received a notice from CNAMTS to cease publishing its medical fee comparison data and linking to any data on Ameli.fr •As an explanation, CNAMTS argued that some data was represented in an unauthorized way and that re-use of medical fee data can only be allowed with permission of the listed medical professionals 24
  • 25. Open Health Data: France•HandiCarto LR •Developed by La Ville de la Rochelle in May, 2012 •App for people with reduced mobility •Offers two features: "My public space" with privileged paths (depending on the type of disability) & citizen guide; and "Sharing information" used to report the available services in the area•Economic & Social Impacts •In July 2012, HandiCaro LR won the Trophées APAJH 2012 award in the category of la Ville citoyenne (~citizen-friendly city)•Open Data Sources •The first mobile app reusing data released on opendata.larochelle.fr 25
  • 26. Open Health Data: France•D-Datasanté •Platform-guide that aggregates and geo-locates all French public health services to help people make better health care decisions •Includes a GPS feature, customizable “health quality” dashboard and a contextualized comparison of available services•Economic & Social Impacts •Project in development •Finalist of the first Dataconnexions Open Data contest in May, 2012•Open Data Sources •Planning to use health data set from data.gouv.fr 26
  • 27. Open Health Data: France•Perceived difficulties in accessing and publishing data in the field of health • “In France, we do not like the transparency of health information. (..) Very little has been done to encourage cost comparison of citizen services”. Barbara NGouyombo, CEO Fourmi Santé, October 24th, 2012 • "Effective access to health care also requires greater transparency in the supply of health. Our role is to enable French public to access a clear and readable information on our health care system. (…) Today, transparency is ensured primarily by private actors. I believe it is up to governments to collect information on hospitals to make them more accessible and transparent. “ Marisol Touraine, Minister of Social Affairs and Health, October 18th, 2012•No open health data and government “intervention for transparency”instead? 27
  • 28. Open Health Data: Germany•Daten.berlin.de •Open Data portal of the city of Berlin •Launched in September, 2011 •Realized by Berlin Online and FOKUS •Currently, 1 health data set: swimming places (water quality) in Berlin•National Open Data portal •As of 2013, Germany is launching a pilot for national Open Government Data portal •Test version initially will offer environmental, geographical and statistic data 28
  • 29. Open Health Data: Germany•Swimming Places in Berlin •Platform displaying quality of swimming places in Berlin •Developed in July, 2012•Economic & Social Impacts •No information found•Open Data Sources • Swimming places - water quality (Liste der Badestellen - Badegewässerqualität) on daten.berlin.de 29
  • 30. Open Health Data: Germany•Ozon Berlin •Platform that displays the current level of ozone in Berlin •Developed in September, 2011 •Graphically refined scale is used to warn of an excessively high ozone exposure•Economic & Social Impacts •Recommend for use of people with respiratory illnesses and children with bronchial spasm•Open Data Sources •Environment data: Air quality (Luftgüte tagesaktuell) on daten.berlin.de 30
  • 31. Open Health Data: Italy•Dati.salute.gov •National Italian Open Health Data portal •Launched in May, 2012 by Italian Ministry of Health •Dedicated to the development, promotion and dissemination of data in the health sector •Currently, 14 datasets including Medical Devices, Drugs, Pharmacies and Parapharmacies •Supported by a Cloud-based infrastructure 31
  • 32. Open Health Data: Italy•OD Parafarmacies •Mobile app containing the full list of Parapharmacies•Economic & Social Impacts •As of September 2012 ,~100-500 downloads•Open Data Sources •Parafarmacie on dati.salute.gov.it 32
  • 33. 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 23
  • 34. Open Health Data: the Netherlands•Open Data Initiatives supported by the Dutch 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
  • 35. Open Health Data: Spain•Datos.gob.es •National Spanish Open Government Data portal •Launched in October, 2011 •Includes general datasets of Spanish Ministry of Health, such as list of healthcare centers or hospitals•Dadesobertes.gencat.cat •Catalonia’s Open Government Data portal •Launched in November, 2010 •Aggregates data from all the public data initiatives in Catalonia •Currently, 24 health datasets, such as diagnostics of the 9 most infectious diseases in the region•Opendata.euskadi.net •Basque Country’s (‘Euskadi’) Open Government Data portal •Launched in 2010 •Broad range of health datasets, such as Hospital statistics (resources, indicators, assistance & economic activity) or Hospital discharges •“In the Basque Country that I want, the citizen is an adult who is able to think, decide and take responsibility by participating in the joint construction of the country. And I want to stress this: the times when citizens were treated like children who are led by the hand, who are told what to do are over. The days when people look to the politic parties or public institutions to know where to walk have come to an end.” President of the Basque Country, Patxi Lopez, January 14th, 2010 35
  • 36. Open Health Data: Spain•Open Data efforts in Spain •The Freedom of Information Act mandating government transparency and the right of citizens to access information has not been released yet •According to Access Info Europe and Fundación Ciudadana Civio, 47 % of the requests for information from the public currently go unanswered in Spain; and only 14 % receive a satisfactory answer •Civio: a Spanish Foundation dedicated to promote citizen engagementand government transparency by advocating data openness and developing innovative applications that enable easy access to public information; founded in December, 2011 •Access Info Europe: a Spain-based NGO, since 2006 dedicated to advancing and defending the right to information as well as creating and promoting Open Government Standards •According to OKFN, regional governments, particularly Basque Country and Catalonia, have been more reluctant to publish data than national government in Spain (blog.okfn.org on July 4th, 2012•Apparent lack of transparency in health sector •No health aggregated data as each region (there are 17 in Spain) controls its health system •According to the President of the Spanish Association of Health Economics, Juan Oliva, the Spanish regional authorities dont publish hospital performance data due to political reasons (El Mundo, November 21st, 2012) 36
  • 37. Open Health Data: Spain•Diagnosticat •Online platform developed by the Catalan Institute of Health (Institut Català de la Salut) in 2011 •Weekly reporting of the EHR cases (80% of primary care doctor use EHR in Catalonia) •Diagnosticat includes epidemiology diagnostics of the 9 most infectious diseases and primary care physician visits rates in Catalonia •Rapid and valid method to determine the trend of certain diseases •Helps surveillance of some health conditions•Economic & Social Impacts •No information found•Open Data Sources •Catalan Institute of Health datasets on dadesobertes.gencat.cat 37
  • 38. Open Health Data: Spain•Basque Government Budget •Platform launched in October, 2012 •Summarizes and publishes last 10 years of public budget evolution (including health care part) of Basque Country•Economic & Social Impacts •No information found•Open Data Sources •Datasets on opendata.euskadi.net 38
  • 39. Open Health Data: Sweden•Opengov.se • Launched in 2009, private initiative of Swedish open government data • To bring together all the available public datasets in Sweden•Vinnova • Swedish Governmental Agency for Innovation • Since 2012, developing a new open data initiative and national portal öppnadata.se • To encourage new innovations by making data openly available and easily accessible 39
  • 40. Open Health Data: Sweden•Medicinera.se •Developed by Scandinavian Outcomes AB, Medicinera.se offers immediate advice for a given health concern •Artificial intelligence for self-diagnosis and self-care •In addition, Medicinera.se provides references to appropriate medications and looks for the nearest pharmacy that can provide the indicated medication•Economic & Social Impacts •Nominated for the 2012 European SME eHealth Competition honoring the best eHealth innovations in Europe • Nominated to the 2011 Swedens Golden Mobile award for the promotion of good and safe use of medicines•Open Data Sources •Swedish medicine register and licensed pharmacists list from the Medical Products Agency (Läkemedelsverket) 40
  • 41. Open Health Data: Sweden•OmVard •Online platform developed by Sanocore AB in 2009 •To bring transparency in the health care system and empower informed health care decisions •Includes information on approximately 16 000 care providers (as of January, 2011) •Gives users possibility of comparing different providers•Economic & Social Impacts •~50 000 visitors/month (January, 2011) •2nd place in the category of Swedish Public Sector sites in 2010 •Best Swedish site of 2009 •Health care IT-award Digital Patient service 2009•Open Data Sources •OmVard brings together data on health centers, elder and home care providers and nursing homes. •Currently, 15 datasets including medical outcome results, compliance to national guidelines for best-practice-care, patient reported outcome measures and waiting time to consultant visits & medical procedures. 41
  • 42. Open Health Data: Sweden•Druggle •Search engine specialized for pharmacology and medical drug information •Collaboration of Karolinska Institutet, Seibo Software Studios & Swedish Institute for Drug Informatics (SIDI) •Intended to function both as a general point of reference as well as a decision support system•Economic & Social Impacts •No information found•Open Data SourcesSummary of Product Characteristics from •European Medicines Agency (EMEA), EU •Läkemedelsverket, Sweden. •National Health Service (MHRA), UK. •Asociación Española de Medicamentos y Productos Sanitarios (AEMPS), Spain. •List of recommended drugs from the Department of Drug Management and Informatics (LMC) in the Stockholm County Council (SLL), Sweden 42
  • 43. Open Health Data: Switzerland•Opendata.ch •Association stimulating the Open Government Data movement in Switzerland formally founded in January, 2012 •Born from the Swiss open data community growing since 2010 •From 2011, in addition to raising awareness and building partnerships, opendata.ch organized conferences and coding events (make.opendata.ch) to encourage open data initiatives in Switzerland 43
  • 44. Open Health Data: Switzerland•Open Health Hack Days 2012 •Swiss Open Data Camp for a more transparent and more innovative healthcare • "A third of the cost of health care consequences of missing data and poor communication!“ Martin Den, President of the Swiss Association for Telemedicine and eHealth 44
  • 45. Open Health Data Recommendation•Advance with efforts to engage with digital citizens•Foster and support a community of evangelists•Make data easy to access, understand and act on • Publish fast, publish often • Encourage and facilitate re-use•More than just publishing data sets •Create awareness and stimulate community initiatives • Facilitate collaboration • Form partnerships with existing public and private open data initiatives•Adequate Policy & Regulatory framework • Support data openness, reuse and R&D • Stimulate entrepreneurship and innovation • Develop standards for information & data literacy•From data to information, knowledge and advancement of the society,politics and economy Government Entities 28 45
  • 46. Open Health Data Recommendation•Data creates value when it is published and exploited•Move to and unleash the opportunities that Open Data presents • Social Analytics • Performance Improvements • New Products and Services • Data-driven Innovation•Support the government’s efforts of publishing data • Search for public-private partnerships and collaboration • Release own datasets to drive innovation•Encourage and support open data conferences, hackathons or mashups•Support and foster cross-sector and cross-border initiatives Private Sector 28 46
  • 47. 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 28 47
  • 48. Sources: United StatesUnited Stateshttp://www.hhs.gov/open/initiatives/hdi/about.htmlhttps://healthmeasures.aspe.hhs.gov/http://www.socrata.com/customer-spotlight/health-system-measurement-project/http://www.healthit.gov/patients-families/blue-button/about-blue-button#footnote-1http://humetrix.com/pr_hdiforum_2012.htmlhttp://cts.businesswire.comhttp://www.vitals.com/http://mobihealthnews.com/http://www.healthdata.gov/blog/archimedes-indigo-helps-patients-make-data-driven-health-decisions#Bep6hzh4iz8Jyhttp://www.mhimss.org/news/archimedes-prepares-put-indigo-patients-handshttp://eon.businesswire.com/http://www.healthdata.gov/blog/100plus-%E2%80%93-app-making-health-care-easierwww.100plus.com
  • 49. Sources: United KingdomUnited Kingdomhttp://www.economist.com/news/britain/21567980-how-scrutiny-freely-available-data-might-save-nhs-money-beggar-thhttp://www.dh.gov.uk/health/2012/06/act-explained/http://www.computerweekly.com/news/2240149724/UK-is-global-leader-in-open-healthcare-data-says-Tim-Kelseyhttp://www.governmentcomputing.com/news/tim-kelsey-heralds-nhs-data-revolutionhttp://hack4health.co.uk/data/http://www.nhs.uk/aboutNHSChoices/Pages/NHSChoicesintroduction.aspxhttp://www.ehealthnews.eu/csc/2960-csc-announces-pocket-health-iphone-apphttp://mapsandapps.dh.gov.uk/2011/09/18/guest-post-we-need-an-app-reflections-from-the-nhs/http://www.coventrypct.nhs.uk/ 24
  • 50. Sources: Austria & BelgiumAustriahttp://www.data.gv.at/anwendungen/fahrschulen-wien/http://epsiplatform.eu/content/austria-launches-national-data-portalBelgiumhttp://www.lapsi-project.eu/openbelgiumhttp://www.bestuurszaken.be/vlaamse-overheid-kiest-voor-open-datahttp://www.nieuwsblad.be/article/detail.aspx?articleid=BLDDI_20110612_004http://appsforghent.be/ 24
  • 51. Sources: FranceFrancehttp://www.d-data.fr/www.Data.gouv.frhttp://epsiplatform.eu/content/france-launches-dataconnexionshttp://www.huffingtonpost.fr/barbara-ngouyombo/open-data-tarifs-sante-assurance-maladie_b_2004495.htmlhttp://www.mutualite.fr/L-actualite/Evenements/Congres/Discours-d-ouverture-de-Marisol-Tourainehttp://www.slate.fr/lien/61395/securite-sociale-fourmi-sante-tarifshttp://owni.fr/2012/11/06/et-si-cetait-la-faim-de-l-open-data/http://epsiplatform.eu/content/row-over-medical-fee-comparison-datahttp://www.politis.fr/Quand-Ameli-attaque-la-Fourmi,19885.htmlhttp://123opendata.com/blog/test-application-fourmi-sante/http://www.fourmisante.com/http://www.ville-larochelle.fr/actualites/detail-actualite/b/2/h/6a223c551c/article/application-handicarto-lr.htmlhttp://blog.exalead.com/2012/05/16/interview-with-benjamin-rivalland-of-d-data-sante/http://www.etalab.gouv.fr/
  • 52. Sources: Germany, Italy, NetherlandsGermanyhttp://ec.europa.eu/isa/news/2012/opendata_en.htmhttp://opendataberlin.wordpress.com/http://daten.berlin.de/anwendungen/ozon-sonarhttp://datenjournalist.de/badestellen-in-berlin-mit-open-data-kartiert/http://open-strategies.de/Italywww.dati.salute.gov.it http://es.appbrain.com/app/od-parafarmacie/it.zamabe.opendata.parafarmacieNetherlandshttp://waag.org/nl/project/apps-voor-nederlandhttp://www.hackdeoverheid.nl/http://www.epractice.eu/en/news/5315481http://openstate.eu/our-mission/hack-de-overheid/http://www.beinformed.com/
  • 53. Sources: SpainSpainhttp://www.elmundo.es/elmundosalud/2012/11/20/noticias/1353437329.htmlhttp://www.access-info.org/en/spain-coalicion-pro-acceso/307-si-saben-pero-no-contestan-http://www.access-info.org/en/open-government-data/302-spain-is-a-world-leader-in-open-data-says-whohttp://blog.okfn.org/2012/07/04/en-boca-cerrada-open-data-in-catalunya-today/http://epsiplatform.eu/content/access-info-europe-set-open-gov-standardshttp://Dadesobertes.gencat.cathttp://Datos.gob.eshttp://opendata.blog.euskadi.net/blog-en/news/basque-government-budget-visualizations/http://opendata.blog.euskadi.net/blog-en/news/transparency-talking-about-the-basque-case-at-a-eu-seminar/http://www.epractice.eu/en/blog/5403601http://opendata.blog.euskadi.net/en/about/http://www.ics.gencat.cat/sisap/diagnosticat/principal?lang=enhttp://ecdc.europa.eu/en/ESCAIDE/Materials/Presentations/ESCAIDE2011_Session_12_2_Mendez.pdf
  • 54. Sources: Sweden, SwitzerlandSwedenhttp://www.sidi.sehttp://www.mynewsdesk.com/se/view/pressrelease/understand-and-cure-health-problems-with-artificial-intelligence-803378http://www.medicinera.sehttp://blog.okfn.org/2009/08/25/opengovse-a-registry-of-open-government-data-in-sweden/Swizerlandhttp://www.Opendata.chwww.make.opendata.ch/http://epsiplatform.eu/content/swiss-found-open-data-associationhttp://epsiplatform.eu/content/does-switzerland-have-no-need-open-government-data-0