Governance for the Many Uses of EHR Data
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1 Governance for the Many Uses of EHR Data Dr. Päivi Hämäläinen, National Institute for Health and Welfare THL, Finland Dr. Päivi Hämäläinen 1
2 Many users, two+ cases 1. Primary use of patient data; multiple care providers in health and social care use the same data/ share data of the patient/client 2. Users other than care givers use the data on the patient for other data needs Patients also have PHR data fully governed by the patient Dr. Päivi Hämäläinen 2
3 National Patient Data Repository, Kanta Services, Finland 179 public health care providers (= all of them) and 90 private health care providers are connected to the service and are able to access the patient data of their patients that have been treated in another organisation. There is data on 5,5 million different persons (patients) in the repository (Finnish population is 5,6 million) Primary use of shared EHRs Dr. Päivi Hämäläinen 3
4 Governance of the data sharing in the Kanta service All public health care providers have to join (my law) the Kanta service and store their patient documents in to the Kanta depository. It is also obligatory for private care providers if they use an EHR system and do not use paper archiving. When data on a patient is saved in the Kanta service for the first time, the patient will be given information on data privacy. They can accept the sharing of all of their data, or they can opt out from some or all sharing. Patients can change their mind at any time and change their opt in s and opt outs via the internet or during a contact to any care provider Dr. Päivi Hämäläinen 4
5 Governance of the data sharing in the Kanta service The care provider organisations are audited before joining the Kanta for proper privacy management. The actors and the process of auditing is in the legislation. They have to have a system to follow the logs for any possible misuse. The Medicolegal surveillance is an authority that follows the proper management of privacy If misuse cases occur they are handled by police/courts as any case of braking privacy Dr. Päivi Hämäläinen 5
6 What has happened? persons have opted out from sharing of all or some of their data (out of 5,5 million) Cases of misuse are very rare and have happened on the local level of EPR systems. (curiosity on famous persons, collages, neighbours, divorce etc. family problem cases) Patients have and access to their own data and also an access to see the logs on which organization has used their data. People are very pleased for the possibility to see their data and this has not increased to work of professionals, Dr. Päivi Hämäläinen 6
7 Logins to My Kanta Pages and Number of Visitors by Month (2/2017) All logins /month (2/2017) Number of different visitors /month 1,89 milj. Different persons have used by My Kanta pages show own medical documents and prescriptions
8 The Constitution of Finland Act on archiving Act on processing of personal data + EU legislation Law of social and health care electronic processing of client data Social welfare legislation Health care legislation Act on health care services Occupational health care laboratory and X-ray Dental care Environmental health Primary care Screenings.. Etc.. Substance abuse care Home services/ home nursing Disability services Institutional care.. Etc.. Child welfare Support for informal care Services of guardianship Immigrations services Adoption counselling Income support.. Etc.. By Maarit Laakso 2013
9 Users other than the care givers use the data Finland has a long history of health and social care data registers with unique personal identifiers that enable the linkage of the data Comprehensive and long-term follow-up data from the registers is used for statistics The data is also much sought after for research purposes. The data in the THL registers, usually combined with data form the National Statistics Institute, gives possibilities for comprehensive and long term follow up of different health and welfare phenomenon. This is an essential tool for the information on the long term outcome of for example health promotion efforts. Secondary use of patient data, EHRs Dr. Päivi Hämäläinen 9
10 Finnish Health Registers give possibilities also for research on long term change Cancers 1953 Tuberculosis and STIs 1958 Congenital anomalies 1963 Occupational diseases* 1964 Special medication* 1964 Adverse drug reactions* 1966 Hospital discharges 1967 Mass Screenings 1968 Causes-of-death* 1969 Abortions and sterilisation 1977 Exposure to cancer- hazardous 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 to primary care 2011 (AvoHilmo) *Not at THL (Occupational Health Institute, Fimea, Social Security Institute) All these registers use personal identification numbers Health Päivi Care Hämäläinen Registers MD, and PhD, constructing MA, Specialist indicators/ of Public Reijo Health Ailasmaa 10
11 Other important registers Social welfare registers Pensions* 1962 Social Benefits (Social Insurance Institute)* 1964 Social assistance 1985 Children taken into custody 1991 Institutionalised care at social institutions 1994 Background data updated continuously by Statistics Finland Education Income Socioeconomic status Country of birth / language Citizenship Marriages and divorces Emigrations and immigration Link between parents and children/siblings All these registers include personal identification number Health Care Registers and constructing indicators/ Reijo Ailasmaa 11
12 Something new: Register of Primary Health Care Visits AvoHILMO Since 2011 Features: Event-based data Diverse data content Computer-based data retrieval Real-time data collection on daily basis Real-time reporting online Coverage; all visits to publicly funded primary care daily This way of collecting data from the IT systems of care providers will be extended to other registers Päivi Hämäläinen MD, PhD, MA, Specialist of Public Health 12
13 Presentation by Sitra on 7th March 2017 Isaacus Digital Health HUB Dr. Päivi Hämäläinen 13
14 Better governance, Digital Health Hub A joint effort has stated to create a National Digital Health Hub for the governance of secondary use of the data in the registers and the EHRs. This hub would be the legal authority to manage the applications / permissions to use the data and would also provide service of safe linkage of data from different sources and could be the safe keeper of the keys to open the linkages. It has been predicted that this centralised governance model would enhance the possibilities of secondary use. Today the researchers etc. have to make multiple applications to every data keeper. Will need new legislation, in drafting phase Dr. Päivi Hämäläinen 14
15 Presentation by Sitra on 7th March 2017 Isaacus Digital Health HUB Dr. Päivi Hämäläinen 15
16 Key principles OECD Recommendation on Health Data Governance 2017 Engagement and participation Coordination and cooperation Approval procedures for the use of personal health data Public disclosure and transparency Capacity of public sector health data systems Recognition of the role of technology Clear provision of information Effective consent and choice mechanisms Monitoring and evaluation mechanisms Training and skills development in privacy and security Controls and safeguards Certification or accreditation
17 What s next? Under discussion : PHR s will open up in the Kanta. How will patients govern the sharing of their own own data to care providers and for secondary use? Opt in out as a Kanta service?, also for biobanks, research etc. How will the European data privacy legislation and it s national implementation affect the possibilities to create a Digital Health Hub for governance / sharing of health data for secondary use? Will the health and social care data in the Kanta service be opened for research/ other secondary use such as development /innovation; a system for persons to consent via the Kanta service? 663 million documents in February Kanta-palvelut / Riitta Konttinen 17
18 Digital Health Hub OECD Recommendation on Health Data Governance Kanta.fi in English Thank you! Päivi Hämäläinen MD, PhD, MA, Specialist of Public Health 18
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