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Open Health Data Resources & Repositories

Raw Data

Open Government Data
- Schweiz
Private Initiatives
- Worldwide:
  - http://www.clinicaltrial.gov/
  - http://opendatafoundation.org/?lvl1=about&lvl2=organization
- USA:
  - Positivliste von gedeckten Medikamenten: http://www.fingertipformulary.com/ (How drugs are covered under Medicare Part D)
  - Statistische Information über Krankheiten: http://www.cdc.gov/DataStatistics/ (Everything the Center for Disease Control (CDC) wants you to know)
  - Records / Stats: https://datamarket.azure.com/dataset/8c30d4d3-0846-4b08-9991-104958f24ca7 (Practice Fusion data: 15,000 records of clinical diagnosis, patient patterns, treatment volumes, and more)
  - Records / Stats: https://www.practicefusion.com/research (Practice Fusion data: 15,000 records of clinical diagnosis, patient patterns, treatment volumes, and more)
  - http://www.va.gov/bluebutton/ - “Download my Data” Knopf im Kriegsveteranen-Gesundheitssystem
- Schweden
  - http://www.medicinera.se
- Schweiz
  - http://www.clinicaltrial.gov/ct2/results?term=switzerland
  - Arzneimittelkompendium: kompendium.ch
  - Arzneimittelkompendium: ywesee.ch
  - Preisvergleiche: comparis.ch, etc.
  - swissIndex: http://www.refdata.ch/content/page_1.aspx?Nid=6&Aid=628&ID=291 (swissINDEX ist eine Datenbank mit Stammdaten über Artikel und Partner im schweizerischen Gesundheitswesen. Die Datenbank ist lizenzkostenfrei verfügbar.)
Andere
Air Pollution:
- Nationales Beobachtungsnetz für Luftfremdstoffe (NABEL)
- In-Luft (Zentralschweiz)
- Luft-AG-BS-SO
- Ostluft
- GR-Luft (Graubünden)
- IBK (Bodenseeregion)
- VD (Kanton Waadt)

Open Data Projects

Krankheitsbilder: http://www.patientslikeme.com/
Prothesen: http://www.openprosthetics.org/, http://opensource.com/life/09/12/can-open-source-create-better-prosthetics
Genom-Information: https://www.23andme.com/
http://curetogether.com/

Standards und Formatfragen

http://openhealth.morfeo-project.org/
http://www.openhealthtools.org/
http://www.openhealth.org/
https://wiki.nci.nih.gov/display/VKC/Open+Health+Natural+Language+Processing+%28OHNLP%29+Consortium
http://resmedicinae.sourceforge.net/
Diverse Anwendungen und Programme: http://www.cms.gov/home/rsds.asp (Treasure trove of data from the Center for Medicare & Medicaid Services (CMS))
Hospital Compare database (Beispiel für Quality metrics) http://hospitalcompare.hhs.gov/ (CMS’s Hospital Compare database – quality metrics for thousands of hospitals)
Tool um Daten zu aggregieren: http://dataferrett.census.gov/ Census and insurance demographics
IHE - http://www.ihe.net/ IHE is an initiative by healthcare professionals and industry to improve the way computer systems in healthcare share information. IHE promotes the coordinated use of established standards such as DICOM and HL7 to address specific clinical need in support of optimal patient care.

Communities / Berichterstattung

http://openhealthnews.com/

Journals

http://www.benthamscience.com/open/tohspj/index.htm

Beratungsfirmen unter dem Open Health Schlagwort

Gesetzgebung

Schweiz
- http://www.admin.ch/ch/d/sr/81.html
- Strategie eHealth Schweiz: http://www.bag.admin.ch/themen/gesundheitspolitik/10357/10359/index.html
USA
- http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act
- http://www.genome.gov/24519851

Cases

Schweiz
- ehealthsuisse, Koordinationsorgan Bund-Kantone, http://www.e-health-suisse.ch/
Canada
- Merck Frosst Canada Ltd. v. Canada (Health), 2012 SCC 3; Entscheid vom 3. Februar 2012: Interessen des Geheimnisberechtigten (Schutzstandard, Beweislast, Informationspflichten): http://scc.lexum.org/en/2012/2012scc3/2012scc3.html

Issue Spotting Exercises (in Aufsätzen und Präsentationen)

Hackathons held

UC Berkeley, 30 Sept 2011 http://entrepreneurship.berkeley.edu/resources/health_data_hackathon_schedule.html
NYC, August 2011: http://www.health20nyc.com/messages/20605811/?action=detail&messageId=20605811
Hackinghealth, CA, 24/25 Feb 2012: http://www.hackinghealth.ca/
Health Tap, Sep 2010: http://blog.healthtap.com/2010/09/hundreds-participate-in-healthtaps-first-ever-health-hackathon/

Cloud Offerings

motherknows.com (not open data)

Musterpolicies für Access

USA:
- http://www.nlm.nih.gov/hmd/manuscripts/phi.pdf

Anything Else

Studie “Personalisierte Medizin”: http://www.ta-swiss.ch/?uid=189