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Datos abiertos en salud - Resumen
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Gesundheit & Medizin
Publicado originalmente en http://www.slideshare.net/EugeneBorukhovich/open-health-data-qualitative-overview
Extraordinaria presentación sobre la aplicación de Open Data en Salud ejemplos y casos de éxito en varios paises.
2. Open Health Data: About the report
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.
“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. 4
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
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 Sources
Data 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 doesn't 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 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)
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 N'Gouyombo, 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 don't 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 Sweden's 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 Sources
Summary 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 States
United States
http://www.hhs.gov/open/initiatives/hdi/about.html
https://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-1
http://humetrix.com/pr_hdiforum_2012.html
http://cts.businesswire.com
http://www.vitals.com/
http://mobihealthnews.com/
http://www.healthdata.gov/blog/archimedes-indigo-helps-patients-make-data-driven-health-decisions#Bep6hzh4iz8Jy
http://www.mhimss.org/news/archimedes-prepares-put-indigo-patients-hands
http://eon.businesswire.com/http://www.healthdata.gov/blog/100plus-%E2%80%93-app-making-health-care-easier
www.100plus.com
49. Sources: United Kingdom
United Kingdom
http://www.economist.com/news/britain/21567980-how-scrutiny-freely-available-data-might-save-nhs-money-beggar-th
http://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-Kelsey
http://www.governmentcomputing.com/news/tim-kelsey-heralds-nhs-data-revolution
http://hack4health.co.uk/data/
http://www.nhs.uk/aboutNHSChoices/Pages/NHSChoicesintroduction.aspx
http://www.ehealthnews.eu/csc/2960-csc-announces-pocket-health-iphone-app
http://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 & Belgium
Austria
http://www.data.gv.at/anwendungen/fahrschulen-wien/
http://epsiplatform.eu/content/austria-launches-national-data-portal
Belgium
http://www.lapsi-project.eu/openbelgium
http://www.bestuurszaken.be/vlaamse-overheid-kiest-voor-open-data
http://www.nieuwsblad.be/article/detail.aspx?articleid=BLDDI_20110612_004
http://appsforghent.be/
24
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/
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. ”