Lasse Lehtosen (HUS) esitys Ensimmäisessä kansallisessa laaturekisterikonferenssissa THL:ssä 29.11.2018.

1. SHORT (AND SOMEWHAT LONGER) HISTORY OF
QUALITY REGISTRIES IN FINLAND
Prof. Lasse Lehtonen
Helsinki University Hospital
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2. LONG HISTORY OF REGISTRIES IN FINLAND:
YOU CANNOT AVOID TAXES
2

3. DATA ON POPULATION,
EDUCATION AND DEATHS
COLLECTED BY THE CHURCH
• The requirement to know
the key elements of the
Christian faith before
confirmation or marriage
– extensive parish
registries
3

4. PUBLIC HEALTH REGISTRIES FORM 1930’s
ONWARDS
• Various registries maintained by the National Board of
Health(Lääkintöhallitus) and later by the National Public
Health Institute (Kansanterveyslaitos)
– E.g. infectious diseases (tbc), mental diseases, malformations
4

5. THE FINNISH CANCER REGISTRY 1953: THE FIRST
REAL QUALITY REGISTRY (ON OUTCOMES)
• The Finnish Cancer Registry maintains a registry of all
cancers diagnosed in Finland from 1953 onwards
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6. FROM 1970’s ONWARDS
• large epidemiological studies with research registries
– E.g North Carelia project / FINRISKI from 1972: data on diet, blood
pressure, cholesterol levels etc.
6

7. THE FINNISH HEALTHCARE REFORM 2015-2018:
“The road to hell is paved with good intentions”
(Saint Bernard of Clairvaux)
• strengthening of primary care
• integration of health and social services
• better access and quality
• patient centeredness
• sustainability of costs
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8. HOW TO PROCEED TO ACHIEVE THE AIMS?
• we have in Finland a lot of quality and costing data available
– how to build the value-based products for the new system
• the acitvities should be organized to a value-adding
production chain the value added by health care process =
health benefits (outcome) / used resources
• The goal is to add value, not to mimimize the costs,
maximize revenues or to produce all possible services
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9. Author/Organisation Definition
Donabedian (1980) Quality of care is the kind of care which is expected to maximize an inclusive measure of
patient welfare, after one has taken account of the balance of expected gains and losses that
attend the process of care in all its parts.
IOM (1990) Quality of care is the degree to which health services for individuals and populations increase
the likelihood of desired health outcomes and are consistent with current professional
knowledge.
Department of Health (UK) (1997) Quality of care is:
• doing the right things (what)
• to the right people (to whom)
• at the right time (when)
• and doing things right first time.
Council of Europe (1998) Quality of care is the degree to which the treatment dispensed increases the patient’s chances
of achieving the desired results and diminishes the chances of undesirable results, having
regard to the current state of knowledge.
WHO (2000) Quality of care is the level of attainment of health systems’ intrinsic goals for health
improvement and responsiveness to legitimate expectations of the population.
EC (2010) Health care that is effective, safe and responds to the needs and preference of patients. Other
dimensions of quality of care, such as efficiency, access and equity are seen as being part of a
wider debate and are being addressed in other fora.
Definitions of quality
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10. • To provide the Commission, upon its request, with advice
on effective ways of investing in health
• In providing advice, to take into account the work of other
Union bodies concerned with the sustainability of health
systems (e.g. Economic Policy Committee, Social Protection
Committee)
• Advice is non-binding
• Commission will circulate advice to Member States
The Mission of the Expert Panel on Effective
ways of Investing in Health (EXPH)
10

11. Quality of health care and patient safety have been
addressed at EU level in many ways (quality and safety of
blood, tissues and organs, quality, safety and efficacy of
medicines or medical devices, cancer screening and
qualifications of health professionals)
• Council Recommendation on patient safety 2009
• Patient Safety and Quality of Care Working Group (PSQCWG)
• The European Union Network for Patient Safety and Quality
of Care (PaSQ) has worked as an integrated part of the
network to bring Member States and interested parties
together to work on Patient Safety and Quality of Care.
Directive of the European Parliament and the Council of the
European Union on the application of patients’ rights in
cross-border health care (Directive 2011/24/EU)
Background for the EXPH Mandate on the
Quality of Health Care
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12. The Expert Panel on Effective ways of Investing in Health is requested to
give its views on a possible future EU agenda on quality of health care with a
special emphasis on patient safety. The opinion of the Expert Panel should
take into account previous and ongoing EU activities on patient safety and
quality of care. In particular, the Expert Panel is requested:
1. To consider the core dimensions of quality of health care, including
patient safety in the European Union.
2. To define within this: (a) dimensions that should be given priority at EU
level in order to improve quality of health care; and (b) actions that
could be taken at EU level to address the selected dimensions.
3. To demonstrate what would be the added value of proposed EU actions.
4. To specify what information is needed to assess quality and safety of
health care in the EU.
Additionally, the Expert Panel is requested to reflect on how the
effectiveness of EU policy in the area of quality and safety of health care
could be evaluated.
The Mandate on Future EU Agenda on
Patient Safety and Quality of Care
12

13. The Opinion
• The Opinion was finalised on October 14, 2014
– http://ec.europa.eu/health/expert_panel/opinions/index_en.htm
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14. • Four operational levels of health care
• nano-level: the single patient-provider-interaction level
• micro-level: occur in the (interdisciplinary) collaboration between
health care providers
• meso-level: the place where policies and organisations operate
that support these collaborations
• macro-level: health care system as whole
Conceptual framework of quality: the
operational levels
14

15. Conceptual framework of quality:
Donabedian’s triangle
15

16. • High quality health care is health care that uses the
available and appropriate resources in an efficient way to
equitably contribute to the improvement of the health of
the population and patients.
• This implies that provision of care is consistent with current
professional knowledge, focuses on the needs and goals of
individuals, their families and communities, prevents and
avoids harm related to care, and involves persons/patients
as key partners in the process of care.
High quality health care (EXPH)
16

17. Dimensions of quality
These dimensions are, however, neither comprehensive nor mutually exclusive.
PATIENT
RESPONSIVENESS
CONTINUITY OF CARE
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18. 1. Effectiveness (improve health outcomes)
2. Safety (prevent avoid harm related with care)
3. Appropriateness (comply with current medical knowledge,
meet standards)
4. Person/patient-centeredness (consider patients/people as
key partner in the process of care)
5. Efficiency and Equity (optimal use of available resources
without differences, variations and disparities in the health
achievements of individuals and groups)
Core dimensions of quality by EXPH
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19. EFFECTIVENESS
Effectiveness refers to the extent to which the
intervention in question produces the intended effects.
In other terms, changes in health status brought about
by health care –or health system- activities.
 Improving Prevention of Diseases and Health Promotion
 Improving Equity in Health
 Identifying the main health problems and define health strategies
 Improving Health through All Policies approach
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20. PATIENT-CENTREDNESS
The degree to which a system actually functions by
placing the patient/user/person at the centre of its
functioning and delivery. In this paradigm the
patient is a key partner of the health care system.
 Access to care and responsiveness to needs
 Respect
 Information and communication
 Continuity and integration of care: care pathways
 Patient choice and empowerment
 Patient involvement in health policy at all levels
 Relevance
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21. EFFICIENCY AND EQUITY
Efficiency is the system’s optimal use of available
resources to yield maximum benefits or results.
Equity refers to the fairness of financing, process and
delivery of health care.
 Attaining highest possible health outcomes given the available resources
 Meso level efficiency
 Micro level
 Equity in health and health care
 Equity in financing
 Avoiding “inequity by disease”
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22. 5 dimensions of quality
Until now health care systems have paid attention primarily to the first three dimensions
Safety
Appropriateness
Person/patient-
centredness
Efficiency and Equity
Effectiveness
prevent avoidable harm related
with care
improve
health
outcomes
comply with
current
professional
knowledge, meet
standards
consider patients/people
as key partners in the
process of care
optimal use of available
resources without
differences, variations and
disparities
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23. Information Needed
INDICATORS
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24. A good INDICATOR should…
be based on agreed definitions
be described exclusively and exhaustively
be highly specific and
sensitive, valid and reliable
be related to clearly identifiable events for the
user
permit meaningful comparisons and be
evidence-based
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25. Definition and Development of Indicators
develop the capacity to create information and operative tools
useful for different stakeholders (policy makers, managers,
health professionals, patients and citizens)
building information systems, such as patient’s registries, post-
market efficacy studies for assessment of risk benefit, or
comparative (relative) effectiveness research, are needed for
assessing quality.
Development of indicators is important to:
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26. Definition and Development of Indicators
It would be useful to develop a Health System Performance
Assessment Framework at EU level, in order to better identify
the dimensions and quality measures required.
At the same time it seems convenient to define the
institutional structure responsible for the management of the
Information of Health Systems at EU level.
The EXPH considers that:
Note: The list of the indicators is only preliminary and suggestive. If indicators are developed further work and
discussion as well as coordination with other initiatives will be needed.
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27. PROCESS INDICATORS
 Respect
 Information and communication
 Access to care and responsiveness
 Continuity and transition of care
 Patient choice and empowerment
 Patient/Citizen involvement in health policy
PATIENT SAFETY APPROPRIATENESS
PATIENT-CENTREDNESS
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28. OUTCOME INDICATORS
 Babies and young children
 Cardiovascular disease
 Respiratory disease
 Liver disease
 Cancer patients
 Psychiatric disease
 Elderly people
Preventing People from Dying
Prematurely
Enhancing Quality of Life for People with
Long-term Conditions
Helping People to Recover from Episodes of Ill Health or
Following Injury
Ensuring that People have a Positive Experience
of Care
Treating and Caring for People in a Safe Environment and
Protecting them from Avoidable Harm
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29. ECONOMIC INDICATORS
 Efficiency
 Outcomes
 Responsiveness
 Expenditures
 Equity
 Financial protection
MACRO LEVEL
MESO LEVELMICRO LEVEL
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30. VBHC principles
1. Add value for the patient (not just mimimize the costs)
• Improve outcomes in relation to the available resources
2. Organize healthcare around value –adding production
• Health care delivery today tends to be organized around dealing with exceptions
3. Measure the value
• Today measurement focuses on interventions, departments, and hospitals, which
are not the appropriate value unit
4. Use of data to manage the system
5. Base reimbursements to the value-added
• Bundled payments
Porter M, Ann Surg, 2008
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31. Early 2018, the Era platform was pilot
tested for detailed international
benchmarking between three countries
• 6 regions
• 40 hospitals
• 100 000 birth cases per year
• Part of Sveus
Sweden
Regional dataRegional dataRegional dataRegional data
Finland
• Kanta Häme Region
• 1 hospital
• 1 400 birth cases per year
• 3 months implementation time
Regional data
France
• CNAMTS (French national Payer)
• 522 hospitals
• 790 000 birth cases per year
• 6 months implementation time
National data
• Early 2018, Era was successfully
launched in Finland and France
• Enabling for the first time detailed
and robust international
benchmarking of entire episodes
of care
• Without transferring personal data
cross borders
Benchmarking
service
Algorithms and aggregated benchmark data
Personal data (only within country boarders)
Country boarder
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32. Large variations in length of stay imply
great potential cost savings
Mean
Top 20%
Moving all hospitals
down to the mean
would imply 135 000
fewer bed days per
year
Moving all hospitals
down to the top 20%
would imply 346 000
fewer bed days per
year
Improvement potential
Note: Each dot represents one of 522 units and the bars represent 95% CI for each hospital
3.5
2.6
Moving all hospitals down
to the level of Sweden
would imply 1.7 million
fewer bed days per year
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33. 33

34. IN A FINNISH HOSPITAL THE ICHOM –GROUPS COVERED ABOUT 40 % OF THE
ACTIVITIES IN KANTA-HÄME CENTRAL HOSPITAL
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35. 35
The development of the quality register
ecosystem in Finland
2003-2011
2012
Framework contract with
Helsinki University Hospital
concerning:
• quality registers
• Integration platform
Framework contract with 4
university hospitals (Turku,
Tampere, Oulu, Kuopio)
concerning:
• quality registers
• Integration platform
• MyHealth
2015
2016
Framework contract with
all (20) hospital districts in
Finland concerning:
• Quality registries
• Integration platform
• MyHealth
• Benchmarking
• Analytics
• IoT
• Quality registers for
orthopaedics

36. Highlights
Hospital districts
20
Customer
accounts
300
a framework contracts with all hospitals
districts for next 5 years including all
university hospitals.
over 240 disease specific registers for
different clinics
Disease specific
registers
104 A disease specific register for over 79
different diseases – the portfolio is one of
the largest in the world.
Treatments
under
monitoring
>1.2 M
end
users
9,000
There are 500 – 3,000 structured data fields
documented per patient. Already one of the
largest disease specific data warehouses in
the world.
integration
messages from
other hospital
systems
220 M
Disease specific register platform is based on
international standards and used by 9,000
Finnish health care professionals for several
years in their everyday work in patient care.
Disease specific registries are
independent from electronic health
record systems and are integrated with
them according to generally accepted
open interface standards such as HL7.
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37. 1
Electronic health record systems
EMR Operating theatre
Laboratory
Radiology
Intensive care
Radiation
Pathology EHR
Data from other systems
National
benchmarking
Knowledge
Portal
Analytics
Datalake A
Data share
(ContentBroker)Datalake B Datalake C
Utilization of data4
3rd party
Mobile
nodes
POC
measurement
devices
MyHealth
Portal
MyHealth
Manager
Data from patients (PROM)3
Quality of
life (15D)
Finnish quality register ecosystem a nutshell
BCB disease specific
registers
BCB 360
o
Clinical data
warehouse
Data from professionals2
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38. BASIC
INFORMATION
• Other diseases
• Home medication
MONITORING PROGRAM FOR PROSTATE
CANCER PATIENTS
Treatment decisionPreoperative Care Postoperative monitoring
CASE: PROSTATE CANCER REGISTER
RESEARCH 1
(Results
immediately)
• IPSS
• PSA
• Uroflow
• TRUS
• TPR
• Status
REASEARCH 2
(Results in 2 weeks)
• Biopsis
• Tumor type
• Body map
• Laboratory tests
RESULTS
• Summary of
results
DECISION OF
TREATMENT
• diagnosis
• Decision of
treatment
pathway
AUTOMATIC
REPORT
Automatic
notification to
authorities
NOTIFICATION OF
CANCER
ACTIVE MONITORING
SURGERY
INTERNAL RADIATION
EXTERNAL
RADIATION
CYTOSTATIC THERAPY
PASSIVE MONITORING
PSA – VALUE
• PSA
• PSA - DT
OTHER MONITORING
• IPSS
• IIEF
PATIENT CARD
• Summary of all prostate cancer information
TIMELINE OF THE CLINICAL PATHWAY
NEW TREATMENT
• Recurrence of cancer
• Decision of new treatment pathway
Clinical pathway of prostate cancer patient
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39. MyHealth (PROM)
signing Right questions
for right patient
activated by QR
Reminders from
QR (SMS)
Patient fulfills the
forms
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40. ONCOLOGY
1. Prostate cancer
2. Kidney cancer
3. Skin cancer
4. Colorectal cancer
5. Breast cancer
6. Brain cancer
7. Gynaecologic cancers
8. Pancreatic cancer
9. Haematology: acute leukaemias
10. Haematology: chronic leukaemias
11. Haematology: other leukaemias
12. Child & adolesc. oncology
13. Lymphoma
14. Myeloma
15. Head & neck cancer
16. Bladder cancer
17. Sarcoma
18. Gastric cancer
19. Lung cancer
OPTHALMOLOGY
1. Cataract
2. Retina
GASTRO
1. Bariatric surgery
2. Hernia surgery
3. IBD
NEUROLOGY
1. Cerebrovascular disturbance
2. Spinal cord injury
3. Aneurysm
4. Epilepsy
5. Hydrocephalus
6. Functional neurosurgery
7. Brain injury
ORTHOPAEDICS
1. Joint replacement surgery
2. Orthopaedic endoscopic surgery
3. Spinal surgery
4. Fracture
5. Hand surgery
CARDIOLOGY
1. ELFYS
2. PCI/ANGIO
3. Pacemaker
4. Heart failure
5. Cardiac surgery
6. Catheter valve
ORGAN TRANSPLANTATION AND
TISSUE BANKS
1. Liver transplantation
2. Kidney transplantation
3. Pancreas transplantation
4. Heart transplantation
5. Lugn transplantation
6. Skin bank
7. Bone bank
8. Eye bank
9. Heart valve and blood vessel bank
10. Bone marrow transplantation
PSYCHIATRY
1. Bipolar disorder
2. Child & adolesc. psychiatry
3. Schizophrenia
4. Psychotherapy
PAEDIATRICS
1. Fracture
2. Spinal surgery
3. Rheumatology
4. Clefts and malformations
5. Diabetes
IMMUNOLOGY
1. HIV
2. PID
OTHER REGISTRIES
1. Rare diseases
2. Pain
3. Nephrology
4. Rheumatology
5. Vascular anomaly
6. Urogynaecology
7. Vascular surgery
8. Asthma
9. Diabetes
10. Nasal surgery
11. Plastic surgery
12. Hospital-acquired infection
13. Upper G1 (Gallbladder-Pancreas –
Liver)
14. Upper G2 (Esophagus–Stomach)
15. Assisted reproduction treatments
16. Resuscitation
Disease specific registers 2018
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41. NATIONAL MODEL IN FINLAND FOR
CLINICAL QUALITY REGISTERS
Scientific Board
Disease specific KOL´s
Orthopeadics Oncology
Neurology
RheumatologyCardiology
Urology
Disease X Disease Y
Disease specific knowledge
Disease specific measurement & indicators
National steering committee
• Top management of University hospitals
• Ministry of Health
• National institute for health & welfare
National guidelines
”Legal issues, permissions,
national coordination & harmonization
Regional hospital districts
Execution & Budgeting
HUSSouth
West
Middle
North
East
SatSHP
Khshp
Lpshp
PSSHP
Eksote Carea PhSotey
VSSHP VSHP
PSHP Epshp
PPSHP Lshp Kpshp Kainuu
Ksshp Pkssk Isshp Esshp
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42. A good INDICATOR should…
be based on agreed definitions
be described exclusively and exhaustively
be highly specific and
sensitive, valid and reliable
be related to clearly identifiable events for the
user
permit meaningful comparisons and be
evidence-based
42