SECONDARY USE OF HEALTH DATA Building new legislation and services Pekka Kahri Director of Information Services THL National Institute for Health and Welfare, Finland Nordic conference on Real World Evidence, Collaboration between Pharma industry and Academia, Helsinki 29.11.2016 12.12.2016 Pekka Kahri 1
PRESENTATION CONTENTS Context THL and Finnish data resources Building new legislation and services 12.12.2016 THL 2
Primary Health Care Specialized Care 12.12.2016
12.12.2016 12.12.2016 THL 2014
THL & FINNISH DATA RESOURCES 12.12.2016 THL 5
THL IMPLEMENTS ITS MISSION THROUGH High-level research Some 100 ongoing research projects financed by EU, the Academy of Finland and the Prime Minister's Office Some 800 scientific articles published annually. Maintenance and utilisation of data resources Increasingly diverse information resources for customers Social and health care development and guidance Methods, tools and data for decision-makers and professionals Parliament consulted our experts on 81 occasions in 2014 12.12.2016 THL 6 12.12.2016
FINNISH HEALTH REGISTRIES Cancers 1953 Health care personnel 1955 Tuberculosis and STIs 1958 Congenital anomalies 1963 Occupational diseases 1964 Special medication 1964 Adverse drug reactions 1966 Hospital discharges 1967 Cancer screenings 1968 Causes-of-death 1969 Abortions and sterilisations 1977 Exposure to cancerhazardous material 1979 Endoprostheses 1980 Drugs (surveillance) 1982 Visual impairments 1983 Births 1987 Infectious diseases 1989 Dental implants 1994 Prescribed drugs 1994 Outpatient visits in public hospitals 1998 Outpatient visits in health care centres 2011 Data collected with national personal id-number 12.12.2016
FINNISH HEALTH SURVEYS Surveys with clinical measures FinRisk study 1972- Mini-Finland 1978-80 Health 2000 2000-01 Health 2011 2011-12 Health 2017 2017 Migrant health and wellbeing study 2010-12 Child and youth health monitoring 2007-09 Surveys with interviews / questionnaires Health behaviour and health among the Finnish adult population Health behaviour and health among the Finnish retirement age population Regional health and wellbeing study (2013-15, 2016-) Survey on work and wellbeing among people with foreign origin (2014-15) Data collected with national personal id-number 12.12.2016
THL KEY CAPABILITIES The availability of and access to high-quality health data & biological samples High competence in analyzing the data and in building relevant research and intervention settings Taking results into action and implementing wide public health and welfare policy programs Maintaining the trust and legitimacy of data collection and related scientific research 12.12.2016 Esityksen nimi / Tekijä 9 12.12.2016
OUR REFORM PLEDGE 2016: 12.12.2016 10
BUILDING NEW LEGISLATION 12.12.2016 Pekka Kahri 12
LEGISLATION ON SECONDARY USES OF HEALTH AND WELFARE DATA Ministry of Social Affairs and Health started the reform of the existing National Health Register Legislation in May 2015. Targeted outcomes: 1) The Act considering national health and welfare registries is modernised; 2) The use of Kanta Data Archive for research purposes is permitted; 3) Enable the use of data for secondary purposes 4) Service Operator Model. 12.12.2016 13
CURRENT SITUATION Source: Irma-Leena Notkola, PhD, Finnish Information Centre for Register Research Researcher @ @ @ @ Register Holder Register Holder Register Holder Register Holder - Permissions - Data Requests - Data Extraction - Correction requests - Corrections - Permissions - Data Requests - Data Extraction - Correction requests - Corrections - Permissions - Data Requests - Data Extraction - Correction requests - Corrections - Permissions - Data Requests - Data Extraction - Correction requests - Corrections
KEY CONCEPTS IN THE NEW LEGISLATION Broaden the possible secondary use cases of health and social welfare data Academic scientific research Applied and industrial research Product development and innovation Education Service operations management Steering and supervision of social and healthcare service system Planning and Legislation aligned with EU general data protection regulation (GDPR) 12.12.2016 Pekka Kahri 15
KEY CONCEPTS IN THE NEW LEGISLATION Centralized services for accessing national health and social welfare data resources Dataset descriptions and information services Portal for applications services Services for data linkage and delivery Secure remote access environment for data handling National authorities in charge of the services Permit authority and services operated THL Steering group with representatives from other data authorities Option to establish a national data broker ltd company 12.12.2016 Pekka Kahri 16
Secondary use of health and social welfare data New value creation SCIENTIFIC AND APPLIED RESEARCH DEVELOP- MENT AND INNOVA- TIONS EDUCATION SERVICE OPERATIONS MANAGE- MENT STEERING AND SUPERVISION PLANNING, SURVEYS, STATISTICS PERMIT AUTHORITY (THL) AND SERVICE Handling data requests SEARCHING DATA: CATALOGUES, PERMITS, ETHICAL APPROVALS ACCESSING DATA: DATA LINGAGES, DELIVERY, PROTECTION Data Resources BIOBANKS, GENOMIC DATA KANTA REPOSITORY, MY KANTA (PHR) NATIONAL HEALTH REGISTERS HEALTH AND SOCIAL SERVICE STATISTICS SOCIO- ECONOMIC DATA Primary Data use OPERATIVE IT-SYSTEMS WITHIN HEALTHCARE AND SOCIAL WELFARE 17 12.12.2016 First name Surname
PROJECTS BOOSTING THE SECONDARY USE OF HEALTH AND WELFARE DATA METADATA Development of a national Metadata Catalogue. THL & Statistics Finland in collaboration with Social Sciences Data Archive and Hospital Districts. DIGITAL ONE STOP SHOP APPLICATION SERVICE Register data and ethical approvals. The National Archives of Finland. REMOTE DATA ACCESS SYSTEMS Expansion to healthcare data. Statistics Finland and THL. 12.12.2016 18
and all this up and running 1.1.2018 Pekka Kahri @kahripe 12.12.2016 Pekka Kahri 19