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What Can Government-Administered Registries Learn from Quality Registries? Marta Ebbing, MD, PhD Department director, Dept. of Health Registries Norwegian.

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Presentation on theme: "What Can Government-Administered Registries Learn from Quality Registries? Marta Ebbing, MD, PhD Department director, Dept. of Health Registries Norwegian."— Presentation transcript:

1 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!

2 Outline Register operation with quality GARs in Norway – S & W How to combine the best from GARs and QRs? Summary and conclusion 2014-12-09Ebbing, NIPH2

3 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  ) 2014-12-09Ebbing, NIPH3

4 Registries Operation with Quality Patient data Paper based Electronic Messages Monitoring message traffic QA of each message Receiving Linking data from different sources QA of aggregated data Preparation Health statistics, in-house research Handing out data Results 2014-12-09Ebbing, NIPH4

5 Registries Operation with Quality Patient data Paper based Electronic Messages Monitoring message traffic QA of each message Receiving Linking data from different sources QA of aggregated data Preparation Health statistics, in-house research Handing out data Results 2014-12-09Ebbing, NIPH5

6 GARs – Legal Regulation Wide purposes Relevant and sufficient information – “need no know”, not “nice to know” Personal integrity and data security 2014-12-09Ebbing, NIPH6

7 GARs in Norway – S & W StrengthtsWeaknesses All individuals or events included 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 2014-12-09Ebbing, NIPH7

8 Two GAR Examples Norwegian Cardiovascular Disease Registry (2012  ) Medical Birth Registry of Norway (1967  ) 2014-12-09Ebbing, NIPH8

9 CVD in Norway 2012-2013 Data SourceUnit20122013 GPs 1 Consultations for CVD or related problems 1 850 9541 814 245 Pharmacies 2 Users of CVD medications (ATC: C) 1 018 8771 039 755 Hospitals 3 Patients with CVD or related diagnoses 339 155327 845 CoDR 4 Patients diseased from CVD 13 01812 132 1 Reimbursementdata from «Kontroll og utbetaling av helserefusjoner» 2 Norwegian Prescription Database 3 Norwegian Cardiovascular Disease Registry 4 Cause of Death Registry 2014-12-09Ebbing, NIPH9

10 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 2014-12-09Ebbing, NIPH10

11 BMJ 2005 331;942-945 based research and those who do not, or cannot, consent. Blanket requirements for explicit consent for the use of individuals' identifiable data can bias disease registers, epidemiological studies, and health services research. PMID: 16223793 [PubMed - indexed for MEDLINE] PMCID: PMC1261192 Free PMC Article Images from this publication. See all images (2) Free text See all images (2) Free text Fig 1Kaplan-Meier survival curve for death from all causes among 187 adults with brain arteriovenous malformations by their consent to participate in an observational study (consenters 2 deaths, non-consenters 12 deaths; log rank=15.8, P=0.0001)Bias from requiring explicit consent from all participants in observational research: prospective, population based studyBMJ. 2005 October 22;331(7522):942-942. Fig 1Kaplan-Meier survival curve for death from all causes among 187 adults with brain arteriovenous malformations by their consent to participate in an observational study (consenters 2 deaths, non-consenters 12 deaths; log rank=15.8, P=0.0001)Bias from requiring explicit consent from all participants in observational research: prospective, population based studyBMJ. 2005 October 22;331(7522):942-942. F i g 2 K a p l a n - M e i e r a n a l y s i s o f t i m e t o f i r s t s e i z u r e a m o n g 1 8 7 a d u l t s w i t h b r a i n a r t e r i o v e n o u s m a l f o r m a t i o n s b y t h e i r c o n s e n t t o p a r t i c i p a t e i n a n o b s e r v a t i o n a l s t u d y ( c o n s e n t e r s 4 2 e v e n t s, non-consenters 13 events; log rank=4.1, P=0.044)Bias from requiring explicit consent from al participants in observational research: prospective, population based studyBMJ. 2005 October 22;331(7522):942-942. PUBLICATION TYPES, MESH TERMS Publication Types Multicenter Study Multicenter Study Research Support, Non-U.S. Gov't Research Sup ort, Non-U.S. Gov't MeSH Terms Adolescent Adolescent Adult Adult Aged Aged Central Nervous System Vascular Malformations/complications Central Nervous System Vascular Malformations/complications Central Nervous System Vascular Malformations/diagnosis* Central Nervous System Vascular Malformations/diagnosis* Central Nervous System Vascular Malformations/mortality Central Nervous System Vascular Malformations/mortality Epidemiologic Methods Epidemiologic Methods Female Female Humans Humans Informed Consent* Informed Consent* Intracranial Hemorrhages/epidemiology Intracranial Hemor hages/epidemiology Intracranial Hemorrhages/etiology Intracranial Hemor hages/etiology Male Male Middle Aged Mid le Aged Patient Selection/ethics* Patient Selection/ethics* Prognosis Prognosis Scotland/epidemiology Scotland/epidemiology Seizures/epidemiology Seizures/epidemiology Seizures/etiology Seizures/etiology Selection Bias Selection BiasLINKOUT - MORE RESOURCES Full Text Sources HighWire HighWire Europe PubMed Central Europe PubMed Central Ovid Technologies, Inc. Ovid Technologies, Inc. PubMed Central PubMed Central PubMed Central Canada PubMed Central CanadaOther Literature Sources Labome Researcher Resource - ExactAntigen/Labome Labome Researcher Resource - ExactAntigen/Labome Access more work from the authors - ResearchGate Ac es more work from the authors - ResearchGate PubMed Com ons home PubMed Commons 0 comments How to join PubMed Com ons Supplemental ContentFULL TEXT LINKS SAVE ITEMS Ad to Favorites View more options RELATED CITATIONS IN PUBMED Demographic and AIDS-related characteristics of consenters to a population-based HIV-survey: results from a pilot study in Arusha, Tanzania. [East Afr Med J. 1994]Demographic and AIDS-related characteristics of consenters to a population-based HIV-survey: results from a pilot study in Arusha, Tanzania. Demographic and AIDS-related characteristics of consenters to a population-based HIV-survey: results from a pilot study in Arusha, Tanzania.Ole-King'Ori N, Klepp KI, Kissila PE, Biswalo PM, Mnyika KS. East Afr Med J. 1994 Aug; 71(8):483-9. Selection bias resulting from the requirement for prior consent in observational research: a community cohort of people with ischaemic heart disease. [Heart. 2007]Selection bias resulting from the requirement for prior consent in observational research: a community cohort of people with ischaemic heart disease. Selection bias resulting from the requirement for prior consent in observational research: a community cohort of people with ischaemic heart disease.Buckley B, Murphy AW, Byrne M, Glynn L. Heart. 2007 Sep; 93(9):1116-20. Epub 2007 May 13. Assessing the impact of the requirement for explicit consent in a hospital-based stroke study. [QJM. 2008]Assessing the impact of the requirement for explicit consent in a hospital-based stroke study. Assessing the impact of the requirement for explicit consent in a hospital-based stroke study.Jackson C, Crossland L, Dennis M, Wardlaw J, Sudlow C. QJM. 2008 Apr; 101(4):281-9. Epub 2008 Feb 15. Written informed consent and selection bias in observational studies using medical records: systematic review. [BMJ. 2009] Written informed consent and selection bias in observational studies using medical records: systematic review. Review Written informed consent and selection bias in observational studies using medical records: systematic review.Kho ME, Duffett M, Willison DJ, Cook DJ, Brouwers MC. BMJ. 2009 Mar 12; 338:b866. Epub 2009 Mar 12. Getting meaningful informed consent from older adults: a structured literature review of empirical research. [J Am Geriatr Soc. 1998] Getting meaningful informed consent from older adults: a structured literature review of empirical research. Review Getting meaningful informed consent from older adults: a structured literature review of empirical research.Sugarman J, McCrory DC, Hubal RC. J Am Geriatr Soc. 1998 Apr; 46(4):517-24. See reviews...See all... CITED BY 18 PUBMED CENTRAL ARTICLES 2014-12-09Ebbing, NIPH11

12 NPR CoDR CPR Core Registry NCVDR 2014-12-09Ebbing, NIPH12

13 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 2014-12-09Ebbing, NIPH13

14 NPR CoDR CPR Stroke Registry Heart Surgery Registry Heart Failure Registry Invasive Cardiology Registry Myocardial Infarction Registry Cardiac Arrest Registry Vessel Surgery Registry Pacemaker- and ICD Registry Core Registry NCVDR 2014-12-09Ebbing, NIPH14

15 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 2014-12-09Ebbing, NIPH15

16 NCVDR Council (2012  ) Regional Health Authorities, Universities/Research, QRs, QR Services, Central Health Authorities 2014-12-09Ebbing, NIPH16

17 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 2014-12-09Ebbing, NIPH17

18 755 878 episodes, 327 845 pasients 575 261 episodes with main diagnosis from qualifying diagnoses 385 677 outpatient visits 189 584 hospital stays NCVDR Core Registry 2013 2014-12-09 18Ebbing, NIPH

19 VariableCRQRCoverage No. of patients with stroke 1 9 7307 26074,6% No. of pasients with AMI 2 14 48512 33685,2 % No. of PCIs at HUH 3 1 3251 29097,4 % No. of CABGs 4 1 9261 91999,6 % No. of pacemaker implantations 5 3 4683 45999,7 % Abbreviations: CR, core registry; QR, quality registry; AMI, acute myocardial infarction; HUH, Haukeland University Hospital; CABG, coronary artery bypass grafting. 1 NCVDR Core Registry (main diagnosis) vs. Stroke Registry 2 NCVDR Core Registry (main or seconrady diagnosis) vs. Myocardial Infarction Registry 3 NCVDR Core Registry vs. Invasive Cardiology Registry 4 NCVDR Core Registry vs. Heart Surgery Registry vs 5 NCVDR Core Registry vs. Pacemaker- and ICD Registry. «Coverage» CR vs. QR in 2013 2014-12-09Ebbing, NIPH19

20 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 2014-12-09Ebbing, NIPH20

21 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 2014-12-09Ebbing, NIPH21

22 No. of Births in Norway 2014-12-09Ebbing, NIPH22

23 No. of Maternity Units in Norway 2014-12-09Ebbing, NIPH23

24 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  ) 2014-12-09Ebbing, NIPH24

25 CPR Core Registry MBRN Hosp 2014-12-09Ebbing, NIPH25

26 Hosp CPR Norwegian Newborn Medical QR Core Registry MBRN 2014-12-09Ebbing, NIPH26

27 MBRN Council (2009  ) Obstetricians, midwifes, NIPH 2014-12-09Ebbing, NIPH27

28 «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 2014-12-09Ebbing, NIPH28

29 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! 2014-12-09Ebbing, NIPH29

30 2014-12-09Ebbing, NIPH30

31 Smoking 2014-12-09Ebbing, NIPH31

32 Overweight & Obesity 2014-12-09Ebbing, NIPH32

33 2014-12-09Ebbing, NIPH33

34 2014-12-09Ebbing, NIPH34

35 Caesarean, All Deliveries 2014-12-09 35Ebbing, NIPH

36 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 2014-12-09Ebbing, NIPH36

37 Caesaerean in Robson 1 2014-12-09 37Ebbing, NIPH

38 Caesaerean in Robson 3 2014-12-09 38Ebbing, NIPH

39 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? 2014-12-09Ebbing, NIPH39

40 2014-12-09Ebbing, NIPH40


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