{"id":1307,"date":"2018-05-08T07:31:11","date_gmt":"2018-05-08T05:31:11","guid":{"rendered":"https:\/\/blog.ki.se\/rektor\/?p=1307"},"modified":"2018-05-14T17:05:52","modified_gmt":"2018-05-14T15:05:52","slug":"bygg-ut-mojligheten-att-anvanda-varddata-i-realtid","status":"publish","type":"post","link":"https:\/\/blog.ki.se\/rektor\/2018\/05\/08\/bygg-ut-mojligheten-att-anvanda-varddata-i-realtid\/","title":{"rendered":"Bygg ut m\u00f6jligheten att anv\u00e4nda v\u00e5rddata i realtid"},"content":{"rendered":"

In English below<\/strong><\/p>\n

I en debattartikel i Dagens Nyheter<\/a> i m\u00e5ndags tar jag och 31 andra f\u00f6retr\u00e4dare fr\u00e5n olika organisationer, samlade i paraplyorganisationen Forska!Sverige<\/a>, upp vikten av att vi f\u00f6rb\u00e4ttrar insamlingen och anv\u00e4ndningen av v\u00e5rddata.<\/p>\n

Sverige har sedan tidigare en unik position n\u00e4r det g\u00e4ller tillg\u00e5ng till h\u00e4lsodataregister och olika kvalitetsregister, n\u00e5got som ger forskare stora m\u00f6jligheter att ta fram ny kunskap om folkh\u00e4lsa, sjukdomsutveckling och liknande p\u00e5 aggregerad niv\u00e5. D\u00e4remot \u00e4r Sverige inte lika framg\u00e5ngsrikt n\u00e4r det g\u00e4ller att samla in, anv\u00e4nda och dela v\u00e5rddata i realtid.<\/p>\n

B\u00e4ttre samordning<\/h4>\n

B\u00e4ttre samordning och struktur ger avsev\u00e4rda f\u00f6rdelar n\u00e4r det g\u00e4ller att skapa b\u00e4ttre behandlingsmetoder, \u00f6kad patients\u00e4kerhet och att undvika misstag och v\u00e5rdskador. Med samordnade system kan vi dessutom uppn\u00e5 en mer j\u00e4mlik v\u00e5rd, minska den administrativa b\u00f6rdan i v\u00e5rden samt \u00f6ka integritetsskyddet och patientdelaktigheten. Och inte minst: Vi kan st\u00e4rka forskningen och utbildningen \u2013 de pelare som h\u00e4lso- och sjukv\u00e5rden vilar p\u00e5.<\/p>\n

I m\u00e5nga l\u00e4nder p\u00e5g\u00e5r nu intensiva utvecklingsprojekt f\u00f6r att skapa synkroniserade databaser och registreringssystem.\u00a0 Sverige \u2013 genom v\u00e5ra h\u00f6gkvalitativa och helt\u00e4ckande h\u00e4lsodataregister inom m\u00e5nga omr\u00e5den \u2013 borde ligga i framkant. Men tyv\u00e4rr g\u00f6r vi inte det.<\/p>\n

Olika system<\/h4>\n

Ett av de st\u00f6rsta problemen \u00e4r att vi har en s\u00e5 stor m\u00e4ngd olika system som inte fungerar bra, eller ens \u00f6verhuvudtaget, tillsammans. Landets 21 landsting och regioner har byggt upp sina separata l\u00f6sningar. F\u00f6r att Sveriges flaggskepp \u2013 kvalitetsregistren \u2013 ska kunna beh\u00e5lla sin ledande st\u00e4llning m\u00e5ste den tekniska strukturen harmoniseras. En splittrad struktur g\u00f6r \u00a0att forskning omkring betydelsen av flera diagnoser hos samma patient \u00e4r mycket sv\u00e5ra att genomf\u00f6ra. Dessutom finns det ett stort antal myndigheter som har olika ansvarsomr\u00e5den och mandat. Det finns brister g\u00e4llande nationella standarder f\u00f6r upphandling och uppbyggnad av v\u00e5rddata och det saknas gemensamma verktyg och metoder f\u00f6r hanterandet av data. Registrering och dokumentation ser dessutom olika ut f\u00f6r olika delar av v\u00e5rden, vilket g\u00f6r det extra sv\u00e5rt att f\u00f6ra \u00f6ver information i v\u00e5rdkedjan.<\/p>\n

Det p\u00e5g\u00e5r ett antal initiativ inom ramen f\u00f6r E-h\u00e4lsovision 2025, ett samarbete mellan regeringen och SKL, Sveriges Kommuner och Landsting. Flera landsting\/regioner arbetar ocks\u00e5 h\u00e5rt f\u00f6r att f\u00e5 till st\u00e5nd mer samordning. Men det r\u00e4cker inte. Det beh\u00f6vs en starkare och tydligare sammanh\u00e5llen nationell strategi och konkreta \u00e5tg\u00e4rder. Staten m\u00e5ste ta en tydligare roll och ett mer samlat ansvar n\u00e4r det g\u00e4ller den samordnade styrningen av v\u00e5rden.<\/p>\n

Tre problemomr\u00e5den<\/h4>\n

I artikeln tar vi fr\u00e4mst upp tre problemomr\u00e5den och l\u00e4gger fram konkreta f\u00f6rslag p\u00e5 f\u00f6rb\u00e4ttringar:<\/p>\n

    \n
  1. Resurserna f\u00f6r forskning och utveckling \u00e4r otillr\u00e4ckliga<\/li>\n
  2. Det saknas en sammanh\u00e5llen strategi f\u00f6r v\u00e5rdinformation<\/li>\n
  3. Det r\u00e5der os\u00e4kerhet kring juridik och policy \u2013 och h\u00e4r kommer \u00e4ven ett nytt regelverk att ta h\u00e4nsyn till i och med implementeringen av den nya dataskyddsf\u00f6rordningen (GDPR) den 25 maj<\/li>\n<\/ol>\n

    L\u00e4s g\u00e4rna DN-artikeln<\/a> f\u00f6r mer detaljer kring de f\u00f6rslag vi presenterar.<\/p>\n

    Etiska perspektiv<\/h4>\n

    Det h\u00e4r \u00e4r mycket v\u00e4sentliga fr\u00e5gor som jag menar m\u00e5ste prioriteras h\u00e4r och nu. Det \u00e4r helt enkelt n\u00f6dv\u00e4ndigt om Sverige ska forts\u00e4tta vara ett framg\u00e5ngsrikt och ledande land n\u00e4r det g\u00e4ller forskning, medicinsk utbildning, v\u00e5rdresultat, utveckling av behandlingsmetoder och \u00f6kad patients\u00e4kerhet. Samtidigt \u2013 och det \u00e4r viktigt \u2013 ska ocks\u00e5 de etiska perspektiven och integritetsskyddet v\u00e4ga tungt i den h\u00e4r utvecklingen. H\u00e4lso- och v\u00e5rddata \u00e4r bland de mest kraftfulla resurser vi har f\u00f6r forskning och kunskapsutveckling. Just d\u00e4rf\u00f6r \u00e4r det extra viktigt att s\u00e4kerst\u00e4lla en h\u00f6g informationss\u00e4kerhet tillsammans med ett genomt\u00e4nkt och fungerande etiskt regelverk som bygger p\u00e5 samtycke.<\/p>\n

    Jag vill ocks\u00e5 passa p\u00e5 att tacka Forska!Sverige f\u00f6r initiativet med debattartikeln och f\u00f6r det \u00f6vriga arbete som g\u00f6rs d\u00e4r f\u00f6r att uppm\u00e4rksamma fr\u00e5gor som r\u00f6r den medicinska forskningens villkor i v\u00e5rt land.<\/p>\n

     <\/p>\n

    Expanding opportunities for using healthcare data in real-time<\/h1>\n

    An op-ed piece in Dagens Nyheter<\/em><\/a> last Monday by 31 other representatives of various organisations and I under the umbrella of Forska!Sverige<\/a> stresses the importance of improving collection and use of healthcare data.<\/p>\n

    Sweden has long been unique when it comes to access to quality and healthcare data registers, which provide researchers with a golden opportunity to compile and interpret statistics about public health, common diseases and the like at the aggregate level. The flipside is that Sweden is not as good at collecting, using and sharing healthcare data in real-time.<\/p>\n

    Better coordination needed<\/h4>\n

    Improved coordination and structure offer distinct advantages as part of efforts to discover more effective treatment methods, bolster patient safety, avoid error and minimize healthcare-related injuries. Realtime coordination would also ensure more uniform care, reduce administrative tasks, protect privacy better and raise the level of patient participation. Last but not least, such integration would strengthen education and research, the twin pillars of the healthcare system.<\/p>\n

    Many countries are in the midst of intensive projects to synchronize databases and data entry systems. Given its history of high-quality, full-coverage healthcare data registers in a number of areas, Sweden should be spearheading such developments. Sadly, that\u2019s easier said than done.<\/p>\n

    Too many different systems<\/h4>\n

    One of Sweden\u2019s problems is an overabundance of disparate systems that don\u2019t work together, if at all. Each of the 21 counties and regions has hammered together its own solution. If the quality registers, the country\u2019s flagship project, are to maintain their leadership, technological structures must be integrated. The current disjointed structure makes it hard to research the impact of comorbidity on health care. Not only that, but a smorgasbord of public authorities are involved, each with its own tasks and spheres of responsibility. National standards for procuring and organising healthcare data are inadequate, while joint tools and methods for processing them are conspicuous by their absence. The various links in the healthcare chain approach documentation and data entry differently, which makes it even more difficult for them to cooperate.<\/p>\n

    A number of initiatives are under way as part of E-health Vision 2025, a collaborative effort between the Government and the Swedish Association of Local Authorities and Regions. Many counties and regions are hard at work improving coordination. But they can\u2019t do it on their own. A more determined, transparent and cohesive national strategy coupled to specific measures is needed. The role of the public sector must be defined more clearly such that it can assume collective responsibility for coordinating management of healthcare services.<\/p>\n

    Three problem areas<\/h4>\n

    The article focuses on three problem areas and proposes specific improvements:<\/p>\n

      \n
    1. Research and development resources are insufficient<\/li>\n
    2. No cohesive strategy for processing healthcare data has emerged<\/li>\n
    3. The relationship of law and public policy remains uncertain, particularly in view of the General Data Protection Regulation that enters into force on 25 May<\/li>\n<\/ol>\n

      Feel free to read the Dagens Nyheter<\/em> op-ed piece<\/a><\/a> for more details about our proposals.<\/p>\n

      Ethical perspectives<\/h4>\n

      These fundamental questions must be prioritized now. There is no way around it if Sweden is to remain a leader in the areas of research, medical training, outcomes, discovery of treatment methods and optimization of patient safety. Be that as it may, ethical perspectives and the protection of privacy must be considered at each step along the way. Healthcare data represent one of the most powerful instruments at our disposal for conducting research and acquiring knowledge. For that reason, ensuring a high level of data security along with well-considered, feasible ethical regulations based on consent is especially important.<\/p>\n

      I would like to thank Forska!Sverige for taking the initiative to publish the op-ed piece, and for all its other efforts to highlight the conditions to which Swedish medical research is subject.<\/p>\n

       <\/p>\n","protected":false},"excerpt":{"rendered":"

      In English below I en debattartikel i Dagens Nyheter i m\u00e5ndags tar jag och 31 andra f\u00f6retr\u00e4dare fr\u00e5n olika organisationer, samlade i paraplyorganisationen Forska!Sverige, upp vikten av att vi f\u00f6rb\u00e4ttrar […]<\/p>\n","protected":false},"author":100,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[128,158,160,26,79,103,162],"tags":[240,43,241,30,239],"class_list":["post-1307","post","type-post","status-publish","format-standard","hentry","category-ethics","category-forskningspolitik","category-halso-och-sjukvard","category-research","category-research-policy","category-rules-and-regulations","category-samverkan","tag-halsodataregister","tag-health-care","tag-kvalitetsregister","tag-research","tag-varddata"],"acf":[],"yoast_head":"\nBygg ut m\u00f6jligheten att anv\u00e4nda v\u00e5rddata i realtid - Ole Petter Ottersen, president Karolinska Institutet 2017-2023<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blog.ki.se\/rektor\/2018\/05\/08\/bygg-ut-mojligheten-att-anvanda-varddata-i-realtid\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Bygg ut m\u00f6jligheten att anv\u00e4nda v\u00e5rddata i realtid - 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