Healthcare infromation sharing

“…the NHS [National Health Service] of the future will be one of patient power, patients engaged and taking control over their own health and healthcare.” –	Gordon Brown, U.K. Prime Minister (http://socialhealthnetwork.org) “The premise is that we are at a new phase of health and medical care, where more decisions are being made by individuals on their own behalf, rather than by physicians, and that, furthermore, these decisions are being informed by new tools based on statistics, data, and predictions … We will act on the basis of risk factors and predictive scores, rather than on conventional wisdom and doctors recommendations. We will act in collaboration with others, drawing on collective experience with health and disease … these tools will create a new opportunity and a new responsibility for people to act - to make health decisions well before they become patients.” –	Thomas Goetz, Decision Tree (http://thedecisiontree.com/blog/?p=278) “We believe that the new generation of web services will change the way medicine is practiced and healthcare is delivered.” –	Bertalan Meskó, medical blogger (http://scienceroll.com/medicine-20)

=List of curable orphan diseases= =Incidence (患者数） of those diseases in Japan and other countries= =Screening system for those diseases in various countries= =The diagnostic test for those diseases and their cost= =Infromation sources=
 * UNIPROT EBIU: http://www.uniprot.org/docs/humdisease
 * 難治性疾患克服研究事業
 * Sharing Health Data for Better Outcomes on PatientsLikeMe
 * slides with important numbers http://www.slideshare.net/patrickconneran/orphan-drugs
 * Orphan net Japan: http://onj.jp/list/index.html 遺伝学的検査のリスト　治療法は？
 * 希少疾病用医薬品指定品目一覧表 copy of tabel


 * Orphan disease drugs : http://www.orpha.net/consor/cgi-bin/Drugs_ListDrugs.php?lng=EN


 * 厚生労働大臣から指定を受けた開発企業が医薬基盤研究所に助成金交付申請を行い、前年度までに助成金が交付された期間（単位：年）を示しています


 * Google 先生　'Doctor Google' ending the diagnostic odyssey in lysosomal storage disorders: parents using internet search engines as an efficient diagnostic strategy in rare diseases.


 * UK report on mash-up; http://www.jisc.ac.uk/media/documents/techwatch/jisctsw_10_01.pdf


 * a client-side API that allowed users to customize the backcloths by overlaying additional data and then embed the finished result into their own website.  GIBSON, R. & ERLE, S. 2006. Google Map Hacks O'Reilly Media Inc.: Sebastopol, CA.


 * Health Map :http://healthmap.org/en/
 * With regard to the research agenda, the mashing of data from disparate sources and disciplines has the potential to open up new areas of research investigation, with Macdonald (2008) citing a number of examples of researchers currently using geo-referenced data and Web 2.0-style mapping facilities including: • Bjørn Sandvik's Thematic Mapping: http://thematicmapping.org • John Hopkins University's Interactive Map Tool: http://www.cer.jhu.edu/maptool.html • Minnesota Interactive Mapping Project: http://maps.umn.edu/ • GeoVista at Pennsylvania State University: http://www.geovista.psu.edu/main.jps • University of Maine's Commons of Geographic Data: http://geodatacommons.umaine.edu • Project Saxta: http://saxta.geog.umd.edu


 * CArtographic database USGS DIGITAL CARTOGRAPHIC DATA BASE:http://www.mapcontext.com/autocarto/proceedings/auto-carto-4-vol-1/pdf/usgs-digital-cartographic-data-base.pdf

The 'classic' view of Information systems found in the textbooks[28] in the 1980s was of a pyramid of systems that reflected the hierarchy of the organization, usually transaction processing systems at the bottom of the pyramid, followed by management information systems, decision support systems, and ending with executive information systems at the top. Although the pyramid model remains useful, since it was first formulated a number of new technologies have been developed and new categories of information systems have emerged, some of which no longer fit easily into the original pyramid model. Some examples of such systems are: data warehouses enterprise resource planning enterprise systems expert systems search engines geographic information system global information system office automation. 
 * Information system


 * to combine and remix the data and services of unrelated, even competing sites. The result: entirely new offerings they call ‘mash-ups’.


 * More precisely, in communications science, a message is information which is sent from a source to a receiver. Some common definitions include: Any thought or idea expressed in a language, prepared in a form suitable for transmission by any means of communication. An arbitrary amount of information whose beginning and end are defined or implied

Active sites
PatientsLikeMe http://www.patientslikeme.com

CureTogether http://www.curetogether.com

MedHelp http://www.medhelp.org

Inspire http://www.inspire.com

DailyStrength http://www.dailystrength.org

OrganizedWisdom http://www.organizedwisdom.co m

WellSphere http://www.wellsphere.com

MDJunction http://www.mdjunction.com

ehealth forum http://ehealthforum.com

HealthChapter http://www.healthchapter.com

Trusera http://www.trusera.com

iMedix http://www.imedix.com

I’m Too Young for This http://www.imtooyoungforthis.org

CareFlash, http://www.careflash.com

Care Pages, http://www.carepages.com

WeAreDiabetic.org, WeAreCeliac.org http://weare.us

PatientsLikeMe http://www.patientslikeme.com

CureTogether http://www.curetogether.com

MedHelp http://www.medhelp.org

Inspire http://www.inspire.com

DailyStrength http://www.dailystrength.org

OrganizedWisdom http://www.organizedwisdom.co m

WellSphere http://www.wellsphere.com

I’m Too Young for This http://www.imtooyoungforthis.org

CareFlash, http://www.careflash.com

Care Pages, http://www.carepages.com

WeAreDiabetic.org, WeAreCeliac.org http://weare.us

MDJunction http://www.mdjunction.com

ehealth forum http://ehealthforum.com

HealthChapter http://www.healthchapter.com

Trusera http://www.trusera.com

iMedix http://www.imedix.com

Wellescent http://www.wellescent.com

WeGoHealth http://www.wegohealth.com

Experience Project http://www.experienceproject.co m

Peoplejam http://www.peoplejam.com

Wellescent http://www.wellescent.com

WeGoHealth http://www.wegohealth.com

Experience Project http://www.experienceproject.co m

Peoplejam http://www.peoplejam.com