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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

01/03/2017

• 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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01/03/2017

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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01/03/2017

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

01/03/2017

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)

01/03/2017

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)

01/03/2017

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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01/03/2017

• 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?

01/03/2017

•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

01/03/2017

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

01/03/2017

The use of registers for

quality improvement

The use of registres in Sweden

•National level

•Regional level

•Local level

•Research and life science

01/03/2017

Results in Swedish Health Care

01/03/2017

•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

01/03/2017

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

01/03/2017

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

01/03/2017

•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 %

01/03/2017

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

01/03/2017

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?

ww

w.ih

i.org

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