Danish research in quality registers
Mette Nørgaard, MD, PhD,
Department of Clinical Epidemiology, Aarhus University Hospital, Denmark
mn@clin.au.dk
Research in clinical quality databases
Developments in the health care system
• Shorter admissions  increased risk of readmissions
• More patients treated in an outpatient setting
• Risk of adverse reactions and complications increases with
more advanced treatments and changing indications
• A number of readmissions and adverse events are
preventable
• Exponentially increasing amounts of data – only used
sporadically for monitoring purposes (large data and big data)
• Patient safety and clinical quality should be monitored locally
You can’t fatten the pig by weighing it; But…
Clinical Quality Databases
(approx. 60 databases – 30MIO DKK)
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The Danish Registry of Biologic Treatments in Rheumatology
The Danish Colorectal Cancer Group Database
The Danish Stroke Registry
The Danish Breast Cancer Cooperative Group Register
The Danish Transfusion Data Base
The Danish Registry on Regular Dialysis and Transplantation
The Danish Quality Database for Breast Cancer Screening
The Danish Cervix Cancer Screening Register
The Danish Hysterectomy Database
The Danish Hip Arthroplasty Registry
The Danish Knee Arthroplasty Registry
The Danish Cruciate Ligament Register
The Danish Shoulder Alloplasty Registry
The Danish Urological Cancer Group Database
DK Quality of care registries - Mission
• Improvement:
Improving prevention, diagnostics, treatment and
rehabilitation
• Management/Accountability:
Documentation for clinical governance and
organisational priority setting
• Transparency:
Information for citizens and patients
• Innovation:
Research infrastructure
Danish Breast Cancer Cooperative Group
(DBCG) as an example
• Established in 1977
• To standardize treatment and improve breast cancer
prognosis
• Data were collected on paper forms until 2007 - online
reporting since
• Included originally patients with invasive breast cancer, but
now expanded to patients with in situ breast cancer and
hereditary breast and ovarian cancer families
• Information on diagnosis, operation, radiation and medical
oncological treatment and follow-up
• When compared with the National Registry of Patients it is
estimated that the DBCG lacks about 5% of the total number
of women with breast cancer in Denmark – those not included
are primarily elderly women
The rolls royce model:
The National Indicator Project
The National Indicator Project (NIP)
• Established in 1999 in the Danish Healthcare System.
• A concerted action between a number of Danish
institutions, including
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the Ministry of Health,
the National Board of Health,
the Centre for Evaluation and Assessment of Medical Technology,
the Association of Danish Regions,
the five regions,
the Danish Medical Association,
the Scientific Societies,
the Danish Nursing Association,
the Danish Physiotherapists Association
the Occupational Therapists Association.
Capture of
relevant data or
direct reporting
by responsible
clinicians
Data
transmission
via Internet
Data analyses
by clinical
epidemiologists
Clinical Registry
Real or virtual
Clinical activities
and data
registration
Monthly/quarterly feedback
to all clinical departments
and MIS
Feedback of risk adjusted
data once a year
Quality
improvement
Public release
Regional
clinical audit
National clinical
audit
The Danish Registry for COPD (DrKOL
CONCLUSIONS:
The positive predictive value of acute COPD
discharge diagnoses in the Danish National
Patient Registry is high (PPV=92%).
At the same time, there is a substantial
underrecording of COPD during
hospitalizations with other acute respiratory
disorders like pneumonia and respiratory
failure (NPV=81%).
What did the clinical quality databases
show?
Stroke
Time of admission
Weekday 0-7, 15-24
30-day mortality
OR (95% CI)
1079/11462 (9.41%) 0.99 ( 0.91- 1.08)
adj. OR* (95% CI)
0.99 ( 0.91- 1.08)
adj. OR** (95% CI)
0.99 ( 0.91- 1.07)
Weekend or holiday 1004/9044 (11.10%) 1.15 ( 1.06- 1.25)
1.12 ( 1.03- 1.22)
1.00 ( 0.92- 1.09)
Weekday 7-15
1.00 (reference)
1.00 (reference)
1207/12695 (9.51%) 1.00 (reference)
* Adjusted for age, sex, Charlson comorbidity score.
** Adjusted for age, sex, Charlson comorbidity score, marital status, previous stroke, diabetes,
atrial fibrillation, smoking, alcohol use, Scandinavian Stroke Scale score, hypertension and type of
stroke
Strengths of clinical quality databases as
research ressource
• More detailed clinical data than the central
health registries
• Defined trajectory for the specific disease
• Easy linkage to national registries via the
CPR-number
Conclusion:
A high pre-diagnostic alcohol
seem to have an effect on the
course of the disease. This could
not be explained by differences
in tumor presentation
Conclusion:
Data do not support the
hypothesis that β-blockers
attenuate breast cancer
recurrence risk
Clinical care research
Medical Care
Variation Research
(Comparative)
effectiveness
research
Evaluation of
Quality
Improvement
Stategies
Routine clinical practice
Conclusion:
approximately 3% experienced
VTE, MI, stroke or bleeding.
These risks did not decline
during the 15-year study
period, while the risk of dying
fell substantially
Routine clinical practice
Conclusion:
Radiotherapy for breast cancer
increased the subsequent rate
of ischemic heart disease
proportional to the mean
radiation dose to the heart.
The increase continued for at
least 20 years.
Routine clinical practice
Evaluation
Quality of early stroke care and hospital costs
Svendsen ML1,2, Ehlers LH3, Hundborg HH1,
Ingeman A1, Johnsen SP1
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Department of Clinical Epidemiology, Aarhus University Hospital,
Aarhus, Denmark
2 Health Technology Assessment & Health Services Research,
Public Health and Quality Improvement, Aarhus, Denmark
3 Danish Center for Health Care Improvements, Faculty of Social Science
and Faculty of Health Science, Aalborg University, Aalborg, Denmark
CONCLUSION
• Early stroke care in agreement with key recommendations
for the early management of patients with stroke may be
associated with potentially large hospital cost savings
Medical care variation
Effectiveness research
Trials
PROCRIN – programme for clinical research
infrastructure
AIM:
to strengthen integration among all
participating databases, registries, and
biobanks in the health care sector
to facilitate data analysis
to integrate research findings into daily
clinical work, building bridges between
research and clinical practice