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What Can
Government-Administered Registries
Learn from Quality Registries?
Marta Ebbing, MD, PhD
Department director, Dept. of Health Registries
Norwegian Institute of Public Health
No conflicts of interest
Thanks to all my colleagues!
Outline
Register operation with quality
GARs in Norway – S & W
How to combine the best from GARs and QRs?
Summary and conclusion
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Norwegian Advantages
All residents unique 11-digit personal ID
All residents access to public health care
Government administered registries (6/17);
Cause of Death Registry (CoDR) (1951)
Cancer Registry (CRN) (1955)
Medical Birth Registry (MBRN) (1967)
Prescription Database (NorPD) (2004)
Patient Registry (NPR) (2008)
Cardiovascular Disease Registry (NCVDR) (2012 )
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Registries Operation with Quality
• Patient data
• Paper based
• Electronic
Receiving
• Monitoring
message traffic
• QA of each
message
• Linking data from
different sources
• QA of aggregated
data
Messages
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Results
• Health statistics,
in-house research
• Handing out data
Preparation
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Registries Operation with Quality
• Patient data
• Paper based
• Electronic
Receiving
• Monitoring
message traffic
• QA of each
message
• Linking data from
different sources
• QA of aggregated
data
Messages
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Results
• Health statistics,
in-house research
• Handing out data
Preparation
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GARs – Legal Regulation
Wide purposes
Relevant and sufficient information – “need no
know”, not “nice to know”
Personal integrity and data security
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GARs in Norway – S & W
Strengthts
All individuals or events
included
Weaknesses
Lack of detailed medical
information
Governmental responsibility;
funding, continuity, data
security, personal privacy
Lack of genuine interest from
relevant health care personnel
Many different registration
systems
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Two GAR Examples
Norwegian Cardiovascular Disease Registry
(2012 )
Medical Birth Registry of Norway (1967 )
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CVD in Norway 2012-2013
Data Source Unit
Consultations for CVD
GPs1
or related problems
Pharmacies2
Hospitals3
CoDR4
Users of CVD
medications (ATC: C)
Patients with CVD or
related diagnoses
Patients diseased
from CVD
2012
2013
1 850 954
1 814 245
1 018 877
1 039 755
339 155
327 845
13 018
12 132
1Reimbursementdata
from «Kontroll og utbetaling av helserefusjoner»
Prescription Database
3Norwegian Cardiovascular Disease Registry
4Cause of Death Registry
2Norwegian
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Norwegian CVD Registry
National, person identifiable, compulsory
Established in 2012
Combined registry (core + 8 QRs)
The Norwegian Institute of Public Health
responsible for data management
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BMJ 2005 331;942-945
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NPR
CoDR
CPR
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Core Registry
NCVDR
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Core Data
Person information
Administrative information
Medical information
Diagnoses from the NPR for outpatient visits and
hospital stays
ICD-10 Ch. IX, codes I00-I99, ++
Procedures from the NPR
NCSP/NCMP Ch. F, P ++
Cause of death from the CoDR
for persons registered with or diceased from CVD
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NCVDR
CoDR
CPR
Core Registry
NPR
Stroke Registry
Myocardial Infarction Registry
Heart Surgery Registry
Cardiac Arrest Registry
Heart Failure Registry
Vessel Surgery Registry
Invasive Cardiology Registry
Pacemaker- and ICD Registry
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Quality Registry Data
Known risk factors for CVD
History of CVD
Current CVD
Medical details on current episode/procedure
Results of health care
Further treatment
Medications
Other secondary prevention efforts
Quality of life / PROMS
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NCVDR Council (2012)
Regional Health Authorities, Universities/Research, QRs, QR Services, Central Health Authorities
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Challenges
Legal issues – personal data act
Technical issues
Quality of data in NPR and CoDR
Too much focus on datacollection, and too little
on analyses?
Many stakeholders, consensus necessary
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NCVDR Core Registry 2013
755 878 episodes,
327 845 pasients
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575 261 episodes with
main diagnosis from
qualifying diagnoses
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385 677
outpatient visits
189 584
hospital stays
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«Coverage» CR vs. QR in 2013
Variable
CR
QR
Coverage
No. of patients with stroke1
9 730
7 260
74,6%
No. of pasients with AMI2
14 485
12 336
85,2 %
No. of PCIs at HUH3
1 325
1 290
97,4 %
No. of CABGs4
1 926
1 919
99,6 %
No. of pacemaker implantations5
3 468
3 459
99,7 %
Abbreviations: CR, core registry; QR, quality registry; AMI, acute myocardial infarction; HUH, Haukeland University
Hospital; CABG, coronary artery bypass grafting.
1NCVDR Core Registry (main diagnosis) vs. Stroke Registry
2NCVDR Core Registry (main or seconrady diagnosis) vs. Myocardial Infarction Registry
3NCVDR Core Registry vs. Invasive Cardiology Registry
4NCVDR Core Registry vs. Heart Surgery Registry vs
5NCVDR Core Registry vs. Pacemaker- and ICD Registry.
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NCVDR Achievements 2012-13
Improvement of quality of health care services
for patients with cardiovascular disease
 Surveillance; incidence and prevalence
 Data for research
 Data for evaluation of results of health care
services – National Quality Indicators
 Stroke, AMI
 Data for planning of health care services
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NCVDR Combined Registry Model
1. Exploit existing data
2. Coordinate data capture, data
handling and analyses
3. Ensure full coverage
4. Ensure influence from clinical
specialists and researchers
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No. of Births in Norway
63,000
62,000
61,000
60,000
59,000
58,000
57,000
56,000
55,000
54,000
53,000
2004
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2005
2006
2007
2008
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2010
2011
2012
2013
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No. of Maternity Units in Norway
68
66
64
62
60
58
≥ 10 Births
56
All
54
52
50
48
46
2004
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2005
2006
2007
2008
2009
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2010
2011
2012
2013
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Medical Birth Registry of Norway
National, person identifiable, compulsory
Established in 1967
Combined registry (core + 1 QR)
The Norwegian Institute of Public Health
responsible for data management (2002)
Core data collected at birth from maternity units via
MBRN system (1967)
QR data collected after birth from hospitals via QR
system (2006)
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Hosp
CPR
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Core Registry
MBRN
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MBRN
CPR
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Core Registry
Hosp
Norwegian Newborn Medical QR
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MBRN Council (2009 )
Obstetricians, midwifes, NIPH
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«QR Data» in MBRN Core Registry
Details on risk factors
Smoking habits (1999)
Body mass index (2005)
Details on deliveries
Robson classification, gestational age ++
Progress and procedures during delivery
Details on the newborn
Congenital malformations
Other conditions at birth
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Statistics by Maternity Units
Since 2008, in cooperation with maternity units
To provide numbers for the maternity units’
evaluation on clinical practice
To provide data for quality indicators published
at helsenorge.no
For the care providers, health administrators
and the public
Handle with care!
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Smoking
Mor røyker ved svangerskapets begynnelse, 2013 (99 % konfidensint.)
Alle
OUS Ullevål
Haukeland
Stavanger
Ahus
St. Olav
Østfold
OUS Rikshosp.
Kristiansand
Vestfold
Drammen
Telemark
Bærum
Haugesund
Ålesund
Tromsø
Lillehammer
Bodø
Arendal
Levanger
Elverum
Førde
Gjøvik
Ringerike
Molde
Volda
Hammerfest
Stord
Harstad
Voss
Kongsvinger
Kristiansund
Namsos
Flekkefjord
Rana
Vesterålen
Kongsberg
Sandnessjøen
Narvik
Kirkenes
0
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10
15
20
25
30
35
40
45
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55
60
65
70
75
80
85
90
95
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Overweight & Obesity
Mor har overvekt eller fedme før svangerskapet, 2013 (99 % konfidensint.)
Alle
OUS Ullevål
Haukeland
Stavanger
Ahus
St. Olav
Østfold
OUS Rikshosp.
Kristiansand
Vestfold
Drammen
Telemark
Bærum
Haugesund
Ålesund
Tromsø
Lillehammer
Bodø
Arendal
Levanger
Elverum
Førde
Gjøvik
Ringerike
Molde
Volda
Hammerfest
Stord
Harstad
Voss
Kongsvinger
Kristiansund
Namsos
Flekkefjord
Rana
Vesterålen
Kongsberg
Sandnessjøen
Narvik
Kirkenes
0
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10
15
20
25
30
35
40
45
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55
60
65
70
75
80
85
90
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Caesarean, All Deliveries
Keisersnitt blant alle fødsler, 2013 (99 % konfidensint.)
Alle
OUS Ullevål
Haukeland
Stavanger
Ahus
St. Olav
Østfold
OUS Rikshosp.
Kristiansand
Vestfold
Drammen
Telemark
Bærum
Haugesund
Ålesund
Tromsø
Lillehammer
Bodø
Arendal
Levanger
Elverum
Førde
Gjøvik
Ringerike
Molde
Volda
Hammerfest
Stord
Harstad
Voss
Kongsvinger
Kristiansund
Namsos
Flekkefjord
Rana
Vesterålen
Kongsberg
Sandnessjøen
Narvik
Kirkenes
0
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15
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25
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helsenorge●no
“Several studies have shown variations in the
incidence of caesarean sections at otherwise
comparable maternity wards in Norway. The
variations can not be explained only from
patient composition of mothers and percentage
of women wanting a caesarean section.
The optimal level of deliveries by caesarean is
not known.”
https://helsenorge.no/Kvalitetsindikatorer/graviditet-og-fodsel/kvalitetsindikator-keisersnitt
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Caesaerean in Robson 1
Keisersnitt innen Robson-gruppe 1, 2013 (99 % konfidensint.)
Alle
OUS Ullevål
Haukeland
Stavanger
Ahus
St. Olav
Østfold
OUS Rikshosp.
Kristiansand
Vestfold
Drammen
Telemark
Bærum
Haugesund
Ålesund
Tromsø
Lillehammer
Bodø
Arendal
Levanger
Elverum
Førde
Gjøvik
Ringerike
Molde
Volda
Hammerfest
Stord
Harstad
Voss
Kongsvinger
Kristiansund
Namsos
Flekkefjord
Rana
Vesterålen
Kongsberg
Sandnessjøen
Narvik
Kirkenes
0
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10
15
20
25
30
35
40
45
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65
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80
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Caesaerean in Robson 3
Keisersnitt innen Robson-gruppe 3, 2013 (99 % konfidensint.)
Alle
OUS Ullevål
Haukeland
Stavanger
Ahus
St. Olav
Østfold
OUS Rikshosp.
Kristiansand
Vestfold
Drammen
Telemark
Bærum
Haugesund
Ålesund
Tromsø
Lillehammer
Bodø
Arendal
Levanger
Elverum
Førde
Gjøvik
Ringerike
Molde
Volda
Hammerfest
Stord
Harstad
Voss
Kongsvinger
Kristiansund
Namsos
Flekkefjord
Rana
Vesterålen
Kongsberg
Sandnessjøen
Narvik
Kirkenes
0
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10
15
20
25
30
35
40
45
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65
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Summary & Conclusion
GARs – some of them with QR qualities
We must reduce the burden of reporting!
Cooperation and concensus – and linking!
Combined registries – the way to proceed?
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