Isaacus Digital Health HUB. Health Tuesday

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Roger James
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1 Isaacus Digital Health HUB Health Tuesday

2 Why Finland? Finland has five advantages 1 2 A genetically isolated population The Finnish genome offers excellent opportunities for specific research Biobanks and the Biobank Act Progressive legislation enables the combining of health, social and genomic data Personal identity numbers Every Finnish citizen has their own identity number which makes it possible to collate the data between registries and combine this data. Universal health and social care registers The public health and social care registers cover practically the whole population Finns trust the governance and research institutes High trust in public governance and academic research creates a solid ground for the secondary use of health and social care data.

3 Why right now? ATTITUDE LEGISLATION COMMITMENT The public has a positive attitude towards the secondary use of healthcare data. The Act on the Safe Use of Health and Social data. Strong co-operation between ministries, public administration and the private sector.

research Development and innovations Other individual related data Data acquisition Data pre

4 Digital Health HUB INFORMATION SOURCE Digital Health HUB INFORMATION USAGE END USERS Customer data from social and health care Requirements identification and data availability Scientific research Development and innovations Other individual related data Data acquisition Data pre processing Data delivery Other data usage STEERING AND CONTROL PERMITS TO USE DATA AND ETHICAL EVALUATION

5 Key milestones of the Isaacus project 2017 JANUARY 2017 JUNE 2017 SEPTEMBER 2017 DECEMBER 2017 JANUARY 2018 New legislation Operations plan for the Digital Health HUB starting 2018 Long-term business plan based on international benchmarking and stakeholder collaboration Pre-production projects ended, functional architecture 1.0 Invest-In and international operations planned

6 Solving the jigsaw of interoperability

7 Interoperability should not be seen too narrowly Legal Interoperability Organizational Interoperability Semantic Interoperability Technical Interoperability

Information portal Telephone Email Permit portal Remote usage starts Remote usage ends ACTION (WHAT YOU DO)

8 Case: The status of diabetes control and prevention of complications Initial info on services available Preliminary service request and advisory services Data usage permit Usage of data MEDIA (WHAT YOU USE) Information portal Information portal Telephone Permit portal Remote usage starts Remote usage ends ACTION (WHAT YOU DO) Explores data catalogue Contacts DHH and describes preliminary service request Applies for permit Use data according to contract

National data descriptions National Primary Care Register (THL) RESEARCHER Diabetes Mellitus OR Diabetes Control Hospital Discharge Register (THL) Medical Birth Register (THL) Population Surveys

9 National data descriptions National Primary Care Register (THL) RESEARCHER Diabetes Mellitus OR Diabetes Control Hospital Discharge Register (THL) Medical Birth Register (THL) Population Surveys (THL) Clinical Population Studies (THL) Causes of Death (Statistics Finland) Drug Reimbursement Register (Kela) Prescription Register (Kela) Linked DM I Cohort (University) National Patient Data Repository (Kela/Kanta) Digital Prescription Archive (Kela/Kanta)

National data descriptions National Primary Care Register (THL) Retirement Hospital Allowances Discharge (FCP) Register (THL) Medical Birth Register (THL) Population Surveys (THL) PensionsClinical

10 National data descriptions National Primary Care Register (THL) Retirement Hospital Allowances Discharge (FCP) Register (THL) Medical Birth Register (THL) Population Surveys (THL) PensionsClinical (Kela) Population Studies (THL) RESEARCHER ( Diabetes Mellitus OR Diabetes Control ) AND Diabetes Complications Causes of Death (Statistics Finland) Drug Reimbursement Register (Kela) Linked DM I Cohort (University) Register for Sosioeconomic Kidney Data National Diseases Prescription (Statistics Patient Data (FKLA) Register Finland) Repository (Kela) (Kela/Kanta) Sickness Benefits (Kela) Digital Prescription Archive (Kela/Kanta)

11 Case: The status of diabetes control and prevention of complications Initial info on services available Preliminary service request and advisory services Data usage license Usage of data MEDIA (WHAT YOU USE) Information portal Information portal Telephone Permit portal Remote usage starts Remote usage ends ACTION (WHAT YOU DO) Explores data catalogue Contacts DHH and describes preliminary service request Applies for license Use data according to contract

12 Case: The status of diabetes control and prevention of complications Initial info on services available Preliminary service request and advisory services Data usage permit Utilization of data MEDIA (WHAT YOU USE) Information portal Information portal Telephone Permit portal Remote usage starts Remote usage ends ACTION (WHAT YOU DO) Explores data catalogue Contacts DHH and describes preliminary service request Applies for permit Use data according to contract

13 Current situation: several PERMIT SERVICES RESEARCHER , PHONE Social Insurance Institution of Finland (Kela) 1) Drug reimbursement register 2) Prescription register , PHONE National Institute for Health and Welfare (THL) 1) Health Care Register HILMO 2) Medical records , PHONE Statistics Finland (TK) 1) Register of causes of death

14 Future: JOINT PERMIT SERVICE RESEARCHER JOINT PERMIT SERVICE Social Insurance Institution of Finland (Kela) 1) Drug reimbursement register 2) Prescription register National Institute for Health and Welfare (THL) 1) Health Care Register HILMO 2) Medical records Statistics Finland (TK) 1) Register of causes of death

15 JOINT PERMIT SERVICE: Usage Provide the following information: 1) Basic information (e.g. research project name) 2) Reseach setting and data definition (e.g. cohort, registers used) SUBMIT 3) Research group (e.g. names, roles) 4) Attachments (e.g. research plan as PDF)

16 Case: The status of diabetes control and prevention of complications Initial info on services available Preliminary service request and advisory services Data usage permit Utilization of data MEDIA (WHAT YOU USE) Information portal (RESEARCH DATA CATALOGUE) Information portal Telephone Permit portal Remote usage starts Remote usage ends ACTION (WHAT YOU DO) Explores data catalogue Contacts DHH and describes preliminary service request Applies for permit Use data according to contract

17 Connecting to the data and analytics platform

18 Current Architecture at TYKS (TUCH)

19 Environment Setup (CCI)

20 Tunneled Services

21 Remote Desktop

22 Data Types: Structured Data

23 Data Types: Signals (remote- and in-patient measuments and much more )

24 The Possibilities of Advanced Analytics Machine Learning, Clustering, Pattern Recognition, Multi-Index Assays,...

25 Digital Health HUB The fastest route to healthcare data #isaacus

FINLAND ON A ROAD TOWARDS A MODERN LEGAL BIOBANKING INFRASTRUCTURE

FINLAND ON A ROAD TOWARDS A MODERN LEGAL BIOBANKING INFRASTRUCTURE Postrefereed, preprint version of the text published at European Journal of Health Law 2013(3)28994. Link to the publisher s website: http://www.brill.com/europeanjournalhealthlaw Sirpa Soini FINLAND ON