Data co-operation kiyi, taura masimba aripo, asi nemamiriro ezvinhu...

Masikati akanaka, vashandi vehutano, uye tinogamuchirwa kuEuropean Alliance for Personalized Medicine (EAPM) update, iyo nhasi inotarisa pane yakakosha nyaya yehutano data co-operation, anonyora EAPM Executive Director Dr. Denis Horgan.

Kushandira pamwe pane data

Mukutaura kwekushanda, kugovera data kune unyanzvi. Padanho rakadzama, kugovana data kune zvematongerwo enyika, pakuti zvinoenderana nekuzvipira kubva kuhurumende nemasangano ehurumende kuti vasvike kunze kwemiganhu yavo yenyika kana yedunhu.  

Asi padanho rakakosha, kugovana data rehutano kunopfuura tekinoroji, kupfuura zvematongerwo enyika. Inodarika maitiro echivanhu ekufunga muhurumende dzenyika nezviremera nezve "zvinoda varwere munyika yedu". Izvi zvinodaro nekuti varwere havasi, uye havafanirwe kuonekwa senyaya yenyika. 

Center stage: Data Empowerment yevarwere paEU Level

Kuve murwere inyaya yemunhu, kumunhu, kumhuri yake nevamiriri, uye kune chero nyanzvi dzehutano dzinobatanidzwa mukuongororwa kana kurapwa. Nyika yemurwere kana chero ani zvake anobatanidzwa ndeyechipiri. Chii chiri musimboti wechiitiko chehurwere - uye kune chero mhinduro kwazviri - zvakanyanya pauzima uye nemunhu. Uye izvo zvinoshanda pamwero wakakosha zvekuti nyika haina basa zvachose. Chinobatanidza munhu wese kwese kwese hunhu hwavo hwese, magumo ayo isu tose, sevanhu, tisinganzvengeki tinogovana nevamwe vese: hupenyu, hutano hwakanaka, hutano, kufa. 

Kusvikira kune zvakakosha zvinowanzoitika pakati pevarwere, hazvisi izvo murwere A uye murwere B vose vari maFrench, kana kuti ose eSpanish. Zviri nani kuti ivo vaviri vanotambura nemamiriro akafanana, kana vane zera rimwechete, kana chimiro. Panguva iyoyo, pane zvakanakira kutora maonero akafara kupfuura munhu, nekuti sezvo sainzi uye tekinoroji zvinovhura mikova yakawanda yekunzwisisa, chiitiko neimwe nyaya - kana zana yakafanana - inogona kujekesa chimiro, chikonzero, kufungidzira. , uye kunyange nzira dzokurapa. 

Panguva iyoyo kugovaniswa kwedata hakungobatsiri chete; kugovana kwakakosha zvekuti kungave kuregeredza kusagovana pamwero weEU. Kugovanisa kunofanirwa kuve kwakavhurika, kusingatsanangurwe kana kuganhurirwa nekufunga zvisina basa kwerudzi, uye kuchingoenderana netsika dzekuchengetedza zvakavanzika. 

Ichi ndicho chikonzero masisitimu anofanirwa kupa nzira kune mweya wekushandira pamwe - uye kusvika pairi mukati mehurongwa hwekuita kudaro, hurongwa hwega hwega hunofanirwa kutsvaga kuwedzera kugovaniswa kwedata, kuchinjika sezvakakodzera hutungamiriri hwayo, sangano, tekinoroji. uye, hungu, gadziriro dzezvematongerwe enyika maererano.

Danho Kuruboshwe: GDPR

Rondedzero yezvichiri kuitika kuti ibudirire munharaunda iyi, yakadhirowewa neKomisheni muna 2013 (anoda kusvika makore gumi apfuura) -omics bepa, inotora chimiro chechiporofita chisina kuzadziswa. Pepa racho rakacherechedza, zviri pachena asi zvakanyatsojeka, "huwandu hwemashoko akakodzera ezvokurapa anowanikwa pamagetsi ari kuwedzera zvakanyanya. Dambudziko nderokuronga zvinyorwa zvemagetsi uye kuita kuti zvishandiswe pakutsvakurudza.

 Chakakosha chedambudziko iri ndechekuti kujaira kushandiswa kwakapararira kwemhinduro dzedhijitari kune hutano nekutarisira kunogona kuwedzera kugara zvakanaka kwemamirioni evagari uye kuchinja zvakanyanya nzira iyo hutano nekuchengetedza masevhisi anounzwa kuvarwere - asi hazvisi kuitika senge. zvakanyanya kana nekukurumidza sezvazvinofanira.

In Kudyidzana kweEAPM nevatori vechikamu vakawanda nemapoka evarwere, masangano esainzi uye masangano ehunyanzvi uye ezvedzidzo anobatana pachirongwa chaisanganisira mamwe mameseji akasimba erutsigiro rwekufambira mberi mukugadzirisa zvinokanganisa munzvimbo ino. Yakatsigira zvakajeka kumisikidzwa kweEuropean Health Data Space kuti ibudise huwandu hwe data yehutano kuzivisa basa revagadziri vemitemo, vaongorori, indasitiri uye vanopa hutano. 

Sezvakataurwa nevatori vedu, kuvanzika kwedata kunoramba kuri nyaya hombe kune vashandi vehutano uye kune vaongorori, uye pavakabvunzwa kuti mutemo weEU wekudzivirira data wakakanganisa basa ravo kusvika papi, vanopfuura hafu yavo vakati kukanganisa kwacho kwanga kwakaipa. uye isingasviki chikamu chimwe chete muzvitatu zvakafunga kuti yanga yakanaka. 

Nzvimbo dzekunetsekana dzaisanganisira kudiwa kwemhinduro nyowani dzemapurojekiti makuru edata uye kushandiswa kwechipiri kwedata, mabhureki ehurongwa hwaive nawo pakumhanya kwebasa, zvichiperekedzwa nekusagadzikana pamusoro pemaitirwo azvinoitwa munyika dzakasiyana. Maindasitiri vakapindura vakatonyanya kutsoropodza, uye muhuwandu hukuru, vachiratidzira kududzira kwakasiyana uye kuwedzera kwezvinodiwa zvekuteedzera zvinokanganisa kubatana kwenyika pakushandiswa kwedata hombe.

Vanamazvikokota vezvehutano vakanzwawo kuti mirau yazvino inogona kuita zvipingamupinyi zvekushandisa zvakanyanya data. Ivo zvakare vakataura mitemo yekudzivirira data, kushaikwa kwekufanana kwemitemo yeEurope nekududzira, uye kutarisa kuvanzika nekurasikirwa kwekusimudzira sainzi nehutano. 

Kune vashandi vehutano, zvipingamupinyi zvikuru pakushandiswa kwemishonga yemunhu kushaikwa kwedata, nyaya dzehupfumi, kushomeka kwekudzidziswa uye dzidzo, mutsauko uripo pakati pekuongororwa uye zvine chekuita nekurapa, kushomeka kwezvinodhaka, nhungamiro yenyika, kuwana kuongororwa kwekuongorora, uye dhizaini yekuyedzwa kwekiriniki. . Oncologists uye pathologists vakawana kudzoserwa kuve chinhu chikuru chinotadzisa varwere vegomarara kuwana mushonga uye mitengo yezvinodhaka yakasvika sechimwe chipingamupinyi chikuru.

Danho Kurudyi: Vatevedzeri Vamiriri veEU

Vatevedzeri vevamiriri veEU mangwana (13 Chivabvu) vachasaina paData Governance Act, bhiri rine chinangwa chekudzora vamiriri vedata vasina kwavakarerekera kukurudzira kugovana data. Basa rakatotanga zvakadaro, sezvo Komisheni yakasimbisa kuti yakatanga kumisa iyo itsva European Data Innovation Board (EDIB).

Uye chii chinonzi EDIB chaungabvunza: Iyo Data Innovation Board isangano idzva, rinounza pamwe chete vamiriri venyika neEU, vachiyambira Komisheni nezvemaitiro ekugovanisa data uye kudhirowa nhungamiro yenzvimbo dziri pedyo dzedhata.

Maonero kubva kumapapiro mumazuva ekupedzisira: European Data Protection Supervisor

European Data Dziviriro Supervisor Wojciech Wiewiórowski anoti kuwana data kunofanirwa 'kugara kwakanyatsotsanangurwa uye kuganhurwa kune izvo zvinonyanya kudikanwa uye zvakaenzana'!

Mune maonero akabatanidzwa, European Data Protection Supervisor neEuropean Data Protection Board vakakwevera pfungwa kune "nhamba yezvinetswa zvakawandisa," vachikurudzira Paramende neKanzuru kuti vazvigadzirise zvine chekuita neEU Health Data Space.

Mitumbi miviri yakabvuma kuti kuedza kwakaitwa kuve nechokwadi chekuti Mutemo weData haukanganise mitemo yedziviriro yedata iripo, asi "dziviriro yekuwedzera" inoonekwa seyakakodzera kuitira kuti isadzikise bhara rekudzivirira data. Mafungiro aya anorova Komisheni - mukuru wepamusoro akambotaura kuti Mutemo weData hausi mudziyo wekudzivirira data uye kuti hapana nhanho inoda "kuchinja kana kukanganisa" General Data Protection Regulation.

Mutemo weData - wakaunzwa muna Kukadzi sechikamu cheEU's 2020 Data Strategy - watanga zvakaipa. Chero zvazvingava, EAPM ichave iripo kutsigira iyo Data governance framework. 

Makomiti akawanda muParamende ari kukandirana makobvu nematete kuti atore chikamu mukugadzirisa bhiri iri, izvo zvave kukonzera mhirizhonga. Rimwe remapato ari kurwira kuti rive nechekutaura ikomiti inoona nezverusununguko, iyo iri kutungamira pamitemo yeEU yekuchengetedza data. Maonero akanyorwa emasangano akavanzika anogona kusimudzira mushandirapamwe wekomiti.

Tarisa kubva kuBrexit: GP kugovera data 'kukanganisa'

Vanhu vanodarika miriyoni imwe chete vakabvisa mvumo kuUK's National Health Service's GP yekugovera dhata, izvo zvazoita kuti chirongwa ichi chivharwe zvichitevera kuchema chema kweveruzhinji. Izvi zvakaitika muna 1 uye pari zvino nyika yakatarisana neramangwana rakasiyana kune rehutano hwayo, iro Ben Goldacre - uyo akatungamira ongororo yekuti nyika ingashandise sei data rehutano - akanyanya kunaka nezvazvo. 

Achitaura pamberi penhengo dzeParamende neChitatu (11 Chivabvu), Goldacre akati chaive chikanganiso kutanga chirongwa cheGP chekugovana data pasina njodzi dzagadziriswa. 

Chakanyanya kurudziro yaGoldacre ikugadzirwa kweTrusted Research Environments (TREs), iyo hurumende yakatotanga kuparura. Chii chakasiyana nezveTRE idzi ndechekuti vanobvumira kubvumidzwa kwakaongororwa kuwana kune de-kuzivikanwa data munzvimbo dzakachengeteka, uko kushandiswa kwedata iri kunogona kurondwa uye iyo data pachayo inogona kugadzirwa saka inonyanya kubatsira kune ramangwana vaongorori vanoda kuishandisa. 

Kuenda kune good news....

€ 100 miriyoni yekutsvagisa hutano muItari

€ 100 miriyoni yakakosha mari yehurumende yave kuwanikwa kune vanoongorora mundima yehutano. Iyo purojekiti yakakamurwa kuita zvikamu zviviri: kusikwa kwetsvakiridzo-yakatarisana nehupenyu sainzi hubs kutyaira hunyanzvi, uye kuvhurwa kwedenda hub yekutarisana nenjodzi dzehutano mune ramangwana. 

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