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Steps towards Personalised Medicine in Estonia


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EuroBioForum 2012 | 18 April 2012
Presentation by Ivi Normet, Deputy Secretary General, Health Ministry of Social Affairs

Published in: Health & Medicine
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Steps towards Personalised Medicine in Estonia

  1. 1. Steps Towards personalisedmedicine in Estonia EuroBioForum 2012 April 18th, 2012 Liis Leitsalu, Ivi Normet
  2. 2. “Estonian advantage”National healthcare system and unifiedregulations across the countryPopulation based biobank and the omics dataIT infrastructure developmentsPositive attitude from the physicians and thegeneral population
  3. 3. Estonian Genome Center of the University ofTartu (EGCUT) Research institute with a longitudinal prospective population based biobank – the Estonian Biobank Established in 2000 Recruitment via primary care providers Over 50,000 gene donors recruited Collection of biological material Database of genotypic, phenotypic, health, and genealogical information
  4. 4. Network of recruiters Primary care providers (PCPs) Network of 640 recruiters 454 GPs (56% of all GPs in Estonia) 186 senior nurses and nurses 30h training
  5. 5. Human Genes Research Act (HGRA)Approved by the Government on Aug 8, 2000HGRA regulates scientific research on human genetics establishment and maintenance of the biobank use of genetic information (informed consent) legislation is forbidding third party access to the database (police, employers, insurance companies etc.)HGRA protects confidentiality of the gene donor public from the misuse of the genetic information gene donor from the genetic discrimination
  6. 6. HGRA cont. HGRA allows Allows re-contacting and collection of health data from other registries Gene donors have the right to get feedback on their genetic information Feedback should be accompanied by clinical counseling
  7. 7. Technical infrastructure ID card – unique, obligatory electronig identity card 1,150,000 ID cards - 90% of Estonians enables unique identification and electronic signature Estonian National Health Information System obligatory for health care service providers to forward medical data into the ENHIS since 2008 X-road nationwide technical infrastructure established by the state a connection between all Estonian public sector databases allowing secure data exchange
  8. 8. HEALTH CARE BOARD EGCUT - Health care providers - Health professionals - Dispensing chemists Pharmacies Emergency 2010 January Medical Service STATE AGENCY OF MEDICINES 2013 - Citizen Registry Hospitals Family doctors School health - Coding Centre -Company Registry 2009 2009 2010- Handlers of medicines SS SS SS SS SS SS SS SS SS X-ROAD SS SS SS Healthcare Patient portal Monitoring portal Provider HEALTH INSURANCE FUND Goverment’s e-service framework Prescription Centre 2010 january KIT EIT AIT W-SS Citizen view Enterprice view Official’s view HEALTH INFORMATION SYSTEM (EHR) 17.12.2008 Doctor’s and Estonian national eHealth infrastructure pharmacies software solutions Slides: courtesy of Dr. Madis Tiik
  9. 9. Future plans To implement the new knowledge of genomics (omics) research in public health To implement a database that can be accessed by all physicians in Estonia would contain genomic data, along with all other medically relevant information could be used in medical counseling
  10. 10. EGCUT IS 2011-2015 Citizen Registry Causes of Death Registry National Digital Health Record DB Participant Updated phenotype ParticipantParticipant data Participant Participant Cancer Registry AdditionalParticipant Participant questions. Timeline Health data. No identification data Operative database Genetic information Data Phenotype database release Online access to database Participant Patient Portal National DHR Scientists Primary care physician
  11. 11. Public’s views and opinion regarding the useof genomic information in personalizedmedicine TNS Emor survey 2011 topics for annual (or every 2-3 years) monitoring knowledge, attitudes and health behavior topics for non-recurrent mapping barriers for testing, motivations for testing, financing, data access 1000 individuals between 15 and 74 composed to be proportional to population structure with respect to age, gender, religion and nationalityCATI (Computer Assisted Telephone Interviewing)
  12. 12. Motivations and barriers for testingGenetic risk predictions through personalized genetic tests are availablealready today. For what extent would You personally be interested in such atest if it is for free of charge?74% very or fairly interested 12% and 8% not very and definitely not interested Which of those statements correspond with your standpoint?So that the doctors could give me 56% Might give me unwanted 40%better advice and help regarding informationmy healthGeneral curiosity about my 47% Results are not reliable, not all is 24%genetic make-up known yet about the genesSo that I could change my lifestyle 45% I am concerned about my 20%and health behavior accordingly privacyIt could be useful for others 39% Results cannot yet be used in 20%(science, offspring) disease treatmentsOther... 0% Other... 23%
  13. 13. Financing and access50% - interested in a genetic test even if they have topay for itWho should have access to the genetic test results? family doctor (PCP) 14% self 12% both self and the PCP 70% Other comments (n=58) Data protection (n=9) Limited trust towards the PCP (n=7) Me first, then the PCP (n=12) PCP has the necessary qualifications (n=14) Interested in more information (n=3)
  14. 14. Challenges ahead1. Support international cooperation for data usage as well as release of biomaterial and phenotype data2. Collecting additional data3. Developing an IT-framework for usage of the genetic information in healthcare4. Integrating all the data sources
  15. 15. Thank you!