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The Danish Experiences in Developing and Using
National Quality Registries
Jan Mainz
Professor, Director, MD., Ph.D., MPA
Jan Mainz
• M.D., Ph.D., MPA
• Professor of Health Services Research and Quality
Improvement, Aalborg University Hospital
• Director, Psychiatry Region NorthDenmark
• Affiliated Professor, University of Haifa, Israel
• Affiliated Professor of University of Southern
Denmark
• Member, OECD Health Care Quality Indicator Expert
Group
• Member of WHO Strategic Planning Group on Quality
and Patient Safety
The Danish Healthcare system
• The Danish Health Care System is mainly
public owned and run
• The public health care services is financed by
taxes
• It is a fundamental principle, that all citizens
should have free and equal access to health
care services
• Freedom of choice of hospitals and general
practitioner
Denmark has unique opportunies for
quality measurement and benchmarking
• Denmark has Unique Personal Identifier
(UPI)
• Denmark has developed Health and National
Quality Registries
National quality improvement initiatives
• National clinical guidelines
• National clinical quality registries (databases)
• National patient satisfaction surveys in somatic
and psychiatic hospital and ambulatory care
• National relatives satisfaction surveys in psychiatic
hospital and ambulatory care
• National Agency for Patients` Rights and
Complaints and reporting of Adverse Events
• The Danish Health Quality Programme
• Public disclosure of quality of care data
Public disclosure of quality of care data
• The Danish e-health portal, sundhed.dk, is a
public, internet based portal that collects and
distributes health care information and
information on the quality of care,
• including waiting times at all hospitals and ratings
of hospitals, departments and clinical units among
the Danish residents and health care professionals
• At country, regional and hospital level
DK Clinical Quality Registries - Mission
• Improving prevention, diagnostics, treatment and
rehabilitation Improvement
• Documentation for clinical governance and
organisational priority setting Management/
Accountability
• Information for citizens and patients
Transparency
• Research infrastructure Innovation
Danish Clinical Registries - framework
• Mandated by law
• Mandatory national coverage (Record completeness)
• Contain information about individual patients
• Fulfilment of national criteria for functionality, data safety and
methodology
• Clinical ownership of and responsibility for content and analysis and
interpretation and ACTION (professional board for each registry)
• Financed by the Regions
• Information can be used for surveillance and improvement of
quality (and research)
• Provide accountability and transparency
The history of clinical quality registries
• 1976 First national registry (breast cancer)
• 2000 The National Indicator Project (10 diseases)
• 2010 Quality Improvement Programme (RKKP)
established
• 70 clinical registries
• Public funding
• Measuring the quality of care
• Public disclosure
Capture of relevant
data or direct
reporting by
responsible
clinicians
Clinical Registry
Real or virtual
Data analyses by
clinical
epidemiologists
Data transmission
via Internet
Clinical activities and
data registration Monthly/quarterly feedback to all
clinical departments and MIS
Feedback of risk adjusted data
once a year
National clinical audit -
or
Regional clinical audit
– or…
Quality
improvement
Important phases in the Danish Clinical Registries
Public release
Basic principles – Professional
ownership
• Health professionals develop evidence
based standards and indicators for major
diseases
• Health professionals assess and interpret
results before public release of data
• Based on scientific and transparent methods
Can quality measurement improve
the quality of care?
What have we achieved?
Improving the quality of stroke care in
Denmark
Lung cancer survival rates 2003-2011
• 1 year survival 36,6 – 42,7 %
• 2 years survival 19,8 – 24,3 %
• 5 years survival 9,8 – 12,0 %
Improving the quality of schizophrenia
care in Denmark 2004-2014
Source:
1. Jørgensen M. Mainz J. Nordentoft M. Voldsgaard I. Johnsen SP. Improving quality of care
among patients hospitalized with schizophrenia: A nationwide initiative . 2015:
Psychiatric Services
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Psychopathology; specialist
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Psychopathology; interview
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Cognitive function
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Social worker
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Antipsychotic treatment
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Contact with relatives
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Psychoeducation
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Professional support
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Psychiatric aftercare
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Ongoing contact
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Suicide risk assessment
01
Proportion
2004
2005
2006
2007
2008
2009
2010
2011
Year
Overall quality of care
RESULTS – INDIVIDUAL INDICATORS 2004 -
2011
The lessons from Denmark
• The quality of care can be improved in a public
health care system
• No economic incentives
• But involvement and ownership of health
professionals
• Increasing political and management focus
• Transparency and accountability
• Danish Clinical Registries is part of the new
Danish Quality Program
CONCLUSION
The Quality of care has improved
substantially since systematic
monitoring and auditing was initiated in
Denmark.
Patient Reported Outcome
Measures
in Danish Health Care
Organisation
The following Databases have PROM
 DANBIO (Rheumatology)
 DugaBase - Danish Urogynological Database
 Danish Obstetrics Registry
 Danish Knee Ligament Register
 Danish Palliative Database
 Prostate Cancer
 Danish Lung Cancer Register
 Shoulder alloplastic
 Non-melanoma
Use of registries as infrastructure for clinical
research
Inequalities: Time of admission and
stroke mortality
Ref.: Kristiansen NS. Stroke. 2014;45:3663-9.
All criminal offences Nonviolent Violent
Total received
processes of
care, %
HR 95 CI HR 95 CI HR 95 CI
< 50 Reference Reference Reference
50-74 0.99 0.86-1.14 1.12 0.93-1.36 0.90 0.76-1.07
>= 75 0.86 0.75-0.99 0.93 0.76-1.14 0.81 0.68-0.97
Quality and Criminal incidents
Kilde: Gjørup Pedersen, C.; Olrik Wallenstein Jensen, S.; Paaske Johnsen, S.;
Nordentoft, M.; Mainz, J.: Processes of in-hospital psychiatric care and subsequent
criminal behaviour among patients with schizophrenia: A national population-based
follow-up study, The Canadian Journal of Psychiatry, 2013
Quality of care for medical comorbidities
among patients with schizophrenia
A Danish nationwide perspective
PhD defense by Mette Jørgensen
AALBORG UNIVERSITY HOSPITAL
PSYCHIATRY
Quality of care for medical comorbidities
among patients with schizophrenia
A Danish nationwide perspective
PhD defense by Mette Jørgensen
What the literature indicates regarding the medical
consequences of schizophrenia
• Excess mortality
• Excess morbidity
• Unfavorable lifestyle behaviors
• Insufficient care for medical comorbidities
Excess mortality in patients with schizophrenia
• Equivalent to a 10-20 years shortened life
expectancy than the general population
Brown S., Br J Psychiatry 1997
Crump C. et al., Am J Psychiatry 2013
Laursen TM. Schizophrenia Research 2011
Summary of all findings
• Small differences in the quality of diabetes,
heart failure and COPD care between
patients with and without schizophrenia
• Predictors of poor medical care included
patient- and system-related factors
• High mortality rates of heart failure and
COPD among patients with schizophrenia
OECD review 2013
• Denmark is rightly seen as a pioneer in health care quality
initiatives among OECD countries. Over many years, it has
developed a sophisticated array of quality assurance
mechanisms.
• Denmark has impressive quality monitoring and
improvement initiatives.
• It has extensive databases on the processes and outcomes
of care.
• It can also boast many local clinical guidelines, national
guidelines and standards developed as part of disease
management programmes and pathways.
Source:
1. OECD reviews of Health Care Quality. Denmark. Raising Standards, OECD 2013.
OECD review 2013
• Primary care is a particular area of concern.
• At present, the lack of data on primary care
activity, compared to other health care sectors,
makes it difficult to know how effectively GPs
and other primary care professionals are
meeting community health care needs.
Source:
1. OECD reviews of Health Care Quality. Denmark. Raising Standards, OECD 2013.
JAN MAINZ
PROFESSOR - DIRECTOR -
MD - PHD - MPA
M: JAN.MAINZ@RN.DK
T: +45 25 57 90 33
35

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The Danish Experiences in Developing and Using National Quality Registries

  • 1. The Danish Experiences in Developing and Using National Quality Registries Jan Mainz Professor, Director, MD., Ph.D., MPA
  • 2. Jan Mainz • M.D., Ph.D., MPA • Professor of Health Services Research and Quality Improvement, Aalborg University Hospital • Director, Psychiatry Region NorthDenmark • Affiliated Professor, University of Haifa, Israel • Affiliated Professor of University of Southern Denmark • Member, OECD Health Care Quality Indicator Expert Group • Member of WHO Strategic Planning Group on Quality and Patient Safety
  • 3. The Danish Healthcare system • The Danish Health Care System is mainly public owned and run • The public health care services is financed by taxes • It is a fundamental principle, that all citizens should have free and equal access to health care services • Freedom of choice of hospitals and general practitioner
  • 4. Denmark has unique opportunies for quality measurement and benchmarking • Denmark has Unique Personal Identifier (UPI) • Denmark has developed Health and National Quality Registries
  • 5.
  • 6.
  • 7. National quality improvement initiatives • National clinical guidelines • National clinical quality registries (databases) • National patient satisfaction surveys in somatic and psychiatic hospital and ambulatory care • National relatives satisfaction surveys in psychiatic hospital and ambulatory care • National Agency for Patients` Rights and Complaints and reporting of Adverse Events • The Danish Health Quality Programme • Public disclosure of quality of care data
  • 8. Public disclosure of quality of care data • The Danish e-health portal, sundhed.dk, is a public, internet based portal that collects and distributes health care information and information on the quality of care, • including waiting times at all hospitals and ratings of hospitals, departments and clinical units among the Danish residents and health care professionals • At country, regional and hospital level
  • 9. DK Clinical Quality Registries - Mission • Improving prevention, diagnostics, treatment and rehabilitation Improvement • Documentation for clinical governance and organisational priority setting Management/ Accountability • Information for citizens and patients Transparency • Research infrastructure Innovation
  • 10. Danish Clinical Registries - framework • Mandated by law • Mandatory national coverage (Record completeness) • Contain information about individual patients • Fulfilment of national criteria for functionality, data safety and methodology • Clinical ownership of and responsibility for content and analysis and interpretation and ACTION (professional board for each registry) • Financed by the Regions • Information can be used for surveillance and improvement of quality (and research) • Provide accountability and transparency
  • 11. The history of clinical quality registries • 1976 First national registry (breast cancer) • 2000 The National Indicator Project (10 diseases) • 2010 Quality Improvement Programme (RKKP) established • 70 clinical registries • Public funding • Measuring the quality of care • Public disclosure
  • 12. Capture of relevant data or direct reporting by responsible clinicians Clinical Registry Real or virtual Data analyses by clinical epidemiologists Data transmission via Internet Clinical activities and data registration Monthly/quarterly feedback to all clinical departments and MIS Feedback of risk adjusted data once a year National clinical audit - or Regional clinical audit – or… Quality improvement Important phases in the Danish Clinical Registries Public release
  • 13. Basic principles – Professional ownership • Health professionals develop evidence based standards and indicators for major diseases • Health professionals assess and interpret results before public release of data • Based on scientific and transparent methods
  • 14. Can quality measurement improve the quality of care? What have we achieved?
  • 15. Improving the quality of stroke care in Denmark
  • 16.
  • 17. Lung cancer survival rates 2003-2011 • 1 year survival 36,6 – 42,7 % • 2 years survival 19,8 – 24,3 % • 5 years survival 9,8 – 12,0 %
  • 18. Improving the quality of schizophrenia care in Denmark 2004-2014 Source: 1. Jørgensen M. Mainz J. Nordentoft M. Voldsgaard I. Johnsen SP. Improving quality of care among patients hospitalized with schizophrenia: A nationwide initiative . 2015: Psychiatric Services
  • 19. 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Psychopathology; specialist 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Psychopathology; interview 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Cognitive function 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Social worker 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Antipsychotic treatment 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Contact with relatives 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Psychoeducation 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Professional support 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Psychiatric aftercare 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Ongoing contact 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Suicide risk assessment 01 Proportion 2004 2005 2006 2007 2008 2009 2010 2011 Year Overall quality of care RESULTS – INDIVIDUAL INDICATORS 2004 - 2011
  • 20. The lessons from Denmark • The quality of care can be improved in a public health care system • No economic incentives • But involvement and ownership of health professionals • Increasing political and management focus • Transparency and accountability • Danish Clinical Registries is part of the new Danish Quality Program
  • 21. CONCLUSION The Quality of care has improved substantially since systematic monitoring and auditing was initiated in Denmark.
  • 24. The following Databases have PROM  DANBIO (Rheumatology)  DugaBase - Danish Urogynological Database  Danish Obstetrics Registry  Danish Knee Ligament Register  Danish Palliative Database  Prostate Cancer  Danish Lung Cancer Register  Shoulder alloplastic  Non-melanoma
  • 25. Use of registries as infrastructure for clinical research
  • 26. Inequalities: Time of admission and stroke mortality Ref.: Kristiansen NS. Stroke. 2014;45:3663-9.
  • 27. All criminal offences Nonviolent Violent Total received processes of care, % HR 95 CI HR 95 CI HR 95 CI < 50 Reference Reference Reference 50-74 0.99 0.86-1.14 1.12 0.93-1.36 0.90 0.76-1.07 >= 75 0.86 0.75-0.99 0.93 0.76-1.14 0.81 0.68-0.97 Quality and Criminal incidents Kilde: Gjørup Pedersen, C.; Olrik Wallenstein Jensen, S.; Paaske Johnsen, S.; Nordentoft, M.; Mainz, J.: Processes of in-hospital psychiatric care and subsequent criminal behaviour among patients with schizophrenia: A national population-based follow-up study, The Canadian Journal of Psychiatry, 2013
  • 28. Quality of care for medical comorbidities among patients with schizophrenia A Danish nationwide perspective PhD defense by Mette Jørgensen AALBORG UNIVERSITY HOSPITAL PSYCHIATRY Quality of care for medical comorbidities among patients with schizophrenia A Danish nationwide perspective PhD defense by Mette Jørgensen
  • 29. What the literature indicates regarding the medical consequences of schizophrenia • Excess mortality • Excess morbidity • Unfavorable lifestyle behaviors • Insufficient care for medical comorbidities
  • 30. Excess mortality in patients with schizophrenia • Equivalent to a 10-20 years shortened life expectancy than the general population Brown S., Br J Psychiatry 1997 Crump C. et al., Am J Psychiatry 2013 Laursen TM. Schizophrenia Research 2011
  • 31. Summary of all findings • Small differences in the quality of diabetes, heart failure and COPD care between patients with and without schizophrenia • Predictors of poor medical care included patient- and system-related factors • High mortality rates of heart failure and COPD among patients with schizophrenia
  • 32.
  • 33. OECD review 2013 • Denmark is rightly seen as a pioneer in health care quality initiatives among OECD countries. Over many years, it has developed a sophisticated array of quality assurance mechanisms. • Denmark has impressive quality monitoring and improvement initiatives. • It has extensive databases on the processes and outcomes of care. • It can also boast many local clinical guidelines, national guidelines and standards developed as part of disease management programmes and pathways. Source: 1. OECD reviews of Health Care Quality. Denmark. Raising Standards, OECD 2013.
  • 34. OECD review 2013 • Primary care is a particular area of concern. • At present, the lack of data on primary care activity, compared to other health care sectors, makes it difficult to know how effectively GPs and other primary care professionals are meeting community health care needs. Source: 1. OECD reviews of Health Care Quality. Denmark. Raising Standards, OECD 2013.
  • 35. JAN MAINZ PROFESSOR - DIRECTOR - MD - PHD - MPA M: JAN.MAINZ@RN.DK T: +45 25 57 90 33 35