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National Quality Registries and
National Health Data Registries – “Driving quality improvement in health
and social care in Sweden”
Mona Heurgren Director
The National Board of Health and Welfare
Sweden
01-03-2017
Outline
•The Swedish health care system
•Our model to improve health care
•Registries in Sweden
•Public reporting
•Examples of use
•Improvement work
•Lessons learned and summary
01/03/2017
The democratic system in Sweden
• Regional level
Elections to the County
Council Assembly
The County Council
Assembly elects the County
Council Executive Board
• •
Local level Elections to the Municipal
Council
The Municipal Council elects
the Municipal Executive
Board
• • •
National level Elections to the Riksdag
(Swedish parliament)
The Riksdag elects the Prime
Minister, who forms a
government
21 Counties 290 Municipalities
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County councils and
municipalities
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• County councils are responsible for
financing and managing health care.
• Health Care activities are financed primarily
from county council taxes and to some
extent from fees and government grants.
• Municipalities are responsible for financing
and managing social care.
Important conditions specific for Sweden
• Legislation – the Health and medical services act (1982)
sets the framework for good care
• Decentralized health care system
• The use of Personal identification number
• National Health Registries and Social Registries - Mandatory
NBHW is responsible
• National Quality Registries – Not mandatory
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2 § The goal for the healthcare system is
good health and care on equal terms for
the entire population. Care should be
given with respect for the equal worth
and dignity of all individuals. The person
with the greatest need for healthcare
should be given priority.
The Swedish Healthcare Act (1982:763)
Good health care and social care
– a shared goal
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The National Board
of Health and Welfare
Our mission statement:
The National Board of Health and
Welfare safeguards health, welfare
and equal access to good
health care and social care.
Works to ensure the provision of good health and
social care.
• Guides with rules, knowledge and government grants.
For example; develop regulations, general advice, national
guidelines and directions
• Performs follow-ups, evaluations and open comparisons
• Issues licenses to practice, certificates of medical
specialist and licenses to provide National Specialized
Medical Care
• National registries and national classifications and
standards
The National Board of Health and Welfare
01/03/2017
Classification
of diseases and causes of death
Corner stones of
good health
The future challenges
• Health in all policies • Partnership •Registries
01/03/2017
The Way We Make
Improvements
National Health Registers, Data
Legislation and Data Collection
National Health Data Registers
•General characteristics
– Mandatory, allowed by law
– Total target population, not a sample
– Personal identitification number
– Not collected for a specific research question
•Overall rules
– No consent required
– No right to be deleted
– Financed by the government by general grants
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National Health Data Registers
• Swedish Cancer Register (1958)
• Medical Birth Register (1973)
• National Patient Register (1987)
• Medical Prescribed Drugs Register (2005)
• Municipal Health and Medical Act Register (2007)
• Dental Health Register (2008)
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National Social Care Registers • Social Assistance
• Interventions according to the Act concerning
Support and Service for Persons with Certain
Functional Impairments (LSS)
• Interventions for children and adolescents
• Social service interventions for the elderly and
the disabled
• Compulsory care of adult substance abusers
• Registers of medical care institutions and personnel (HOSP)
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Health Data Register Act
• Objectives for which data may be processed
– Produce health statistics
– Follow-up, evaluation and quality assurance of
health care and social care
– Research and epidemiological studies
• Ordinances define register content
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• More than 100’s of National Quality Registries
• Provides the Swedish health care system with
a unique opportunity to monitor quality and
results.
• Contains individualized data about medical
interventions, procedures and outcomes.
• Not mandatory, consent is required
• The registries are owned by the County Councils
National Quality Registers
How are Quality Registers produced?
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•Most are integrated into clinical workflows
and have the capacity to generate data in
real time.
•Each registry is supported by an
organization of health care professionals,
researchers and patient representatives.
•They are jointly responsible for developing
the registry.
The philosophy – quality registers
• Registries are for learning and quality improvement - not
for supervision
• Only the professional groups themselves can build and
maintain registries that produce good, valid outcome data
• Registry data can be aggregated and used in different
ways and on different levels in the health care system, but
the usefulness for improvement work in the clinic is
fundamental
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Financing 2016
•State:
– 220 million Swedish kronor, approx 22 million Euro
– From 2017 about 10 million Euro
•County councils:
– 100 million kronor, approx 10 million Euro
Governed Project 2012-2016 with substantial
financing from the state
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Perceived
benefit
Perceived
burden >
The perceived benefits of
quality measurement
must be greater than the
perceived burden
• No data extraction from the health record
• Duplicate data entry • Paper questionnaires • Multiple log-ins • Data feedback delays • Inaccessible data
that is hard to interpret
• Better health and care
• Support for learning and improvement
• Professional development
• Ability to compare performance
• Valid measures
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The use of registers for
quality improvement
The use of registres in Sweden
•National level
•Regional level
•Local level
•Research and life science
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Results in Swedish Health Care
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•Sweden has a strong position on health care
results, for example survival rates after heart
attack, stroke, and cancer survival
•Other areas are neonatal care, diabetes care
and hip replacement surgery
•Average costs among OECD countries
•Sweden has challenges with equal health
(socio economic), regional differences and
the development in mental health care
x/x/20xx
Death 28 days after Hospital
care, MI
– Myocardial infarction Men
Women
Circle size =
county population
Survival 5 years after
breast and prostate cancer
65
70
75
80
85
90
95
100
1995-1999 2000-2004 2005-2009 2010-2014
Bröstcancer, kvinnor
Prostatacancer, män
Källa: Cancerregistret, Socialstyrelsen.
Relative 5-year survival for breast and prostate cancer. Refers patients 30-89 years of diagnosis. Age-standardized values.
Procent
The future challenges
The Way We Make
Improvements
• Transparency and HSPA
• Systematic
improvements
• Personcentered care
and innovations
01/03/2017
Corner stones of
good health
Transparency
01/03/2017
Performance assessment
and regional comparisons
Birgitta Lindelius
Head of unit
01/03/2017
Public reporting in Sweden – follow-up and evaluations based on indicators
Comparisons Social Sector
- Children and youth
- Care for elderly
- Care for disabled,
abuse and dependence
Regional Comparisons
- Health care system
- Safe care/patient safety
- Preventive health care
- Cancer
National Guidelines
Compliance to
important
recommendations
in the National
Guidelines.
01/03/2017
Aims of public reporting
• To give decision makers on a local, regional and national
level some basis for possible priorities and other decisions
• To encourage providers and support management to
improve their performance.
• Report on the achievement of the counties in terms of
quality and efficiency, for increased transparence.
• To stimulate public debate on good quality of care on
national, regional and local level.
... in both Health care and the Social sector
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Usage of benzodiazepines
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Educational levels and benzodiazipines
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Longtime treatment
with soporifics or
sedatives
The proportion of
regular users is much
higher among women
and individuals with
shorter educations.
Performance assessement – compliance to national guidelines
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Performance assessments
• Based on key recommendations in the National
Guidelines
• Indicators are used for:
– Assessments of compliance to National Guidelines
– Monitoring and evaluating processes and outcome of care over
time
– Improving quality and efficiency of health care and social services
• Developed in close collaboration with experts, specialists,
national registers, health care quality registers,
questionnaires and of course national guideline
co-workers
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Available assessments
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• Cardiac care (av. in English, 2009)
• Breast, prostate or colorectal cancer
• Musculoskeletal diseases, (av. in English, 2014)
• Asthma and COPD
• Diabetes (av. in English, 2012)
• Psychiatric diseases
• Dental care
• Stroke (av. in English, 2011)
• Depression, anxiety and schizophrenia
• Dementia
• Disease prevention
Ongoing • Cardiac care (update)
• Lung cancer
• Palliative care
• MS and Parkinson's
disease
Target levels
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•Important tools for quality improvement
•E.g. indicate the proportion of a particular
patient group that ought to be subject to
a specific treatment or intervention.
•Reliable data/data source necessary
•County councils and municipalities are
expected to work towards reaching the
set target(s)
80 %
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National guideline for Cardiac Care
0 10 20 30 40 50 60 70 80 90 100
Örebro
Jönköping
Västernorrland
Stockholm
Värmland
Uppsala
Sörmland
Kalmar
Blekinge
Dalarna
Norrbotten
RIKET
Gävleborg
Västra Götaland
Skåne
Västerbotten
Östergötland
Kronoberg
Jämtland
Halland
Gotland
Västmanland
Procent
Warfarin NOAK
Anticoagulant treatment in patients with atrial fibrillation and co-existing risk factor for
stroke
Source: The National Patient Register, Prescribed Drug Register
77
77
76
74
74
73
72
70
70
70
70
69
69
69
69
68
68
68
67
67
66
62
National Target Level: ≥ 80 %
81
24
158
79
136
341
240
1283
1649
352
10198
331
378
220
128
348
425
434
2398
371
566
256
Additional numbers of patients to reach target level
Proportion of patients with atrial fibrillation and co-existing risk factor for stroke treated with anticoagulant drugs within 6
months after hospitalization
Percent
National
target level
of the
indicator: ≥
80 %
Conclusion
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National guidelines for Cardiac Care
0
10
20
30
40
50
60
70
80
90
100
2015 2014 2013 2012 2011 2010
Procent
År
Kvinnor Män Totalt
National target level: ≥ 80 %
Anticoagulant treatment in patients with atrial fibrillation and co-existing risk
factor for stroke
Percent
Proportion of patients with atrial fibrillation and co-existing risk factor for stroke treated with anticoagulant drugs
within 6 months after hospitalization
Source: The National Patient Register, Prescribed Drug Register
Women Men
National guidelines for Cardiac Care
Introduction of target level
Amount of patient treated
with anticoagulant drugs
has increased at a higher
rate after establishment
of national target level as
compared to when only
National Guidelines
recommendation was
available without national
target level
Research and improvement work
Research
01/03/2017
•The registers are key factors for medical
research in Sweden
•483 articles 2016 only from National Quality
Registers
•Data can be combined from national health
data registers, social care registers,
population registers and quality registers for
research purposes
•Research on a total population – not samples
Powerful New Idea
N Engl J Med 2013. DOI: 10.1056/NEJMoa1308789
Improvement work
– local level
Quality registers are useful for
clinical improvement
• Online data
• Patient reported data
• Statistics and indicators
• Comparisons and good examples
01/03/2017
How should clinicians
and managers go from this…
…and this…
…to this?
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w.ih
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The future
01/03/2017
The Way We Make
Improvements
Corner stones of
good health
The Challenges
01/03/2017
•An organization for quality registers that is
sustainable for the future
•Patient integrity and desires to develop the
use of data
•Efficient organizations
– better ways to collect data
•The white spots
•Development Technical platforms
Lessons learned
01/03/2017
•Trust between the actors is crucial
•The administrative burden for registration is a
key factor
•The professionals in health care and social
care must be involved to a high degree
•Focus on data quality and the use of
standards
•Knowledge about improvement methods
Summary
01/03/2017
•Quality registers and Health data registers
are crucial resources for:
- Improvement work
- Follow up and analysis on local, regional and
national level
- Research
• Transparency drives quality
• Trust is a key issue when building and
maintaining registers
More information:
www.socialstyrelsen.se