This document discusses linking disease registry information and predictive modeling. It describes the characteristics of national clinical databases in England, including three main types: routine administrative databases, clinical registries, and national clinical audits. Over 60 national clinical audits exist, covering a wide range of clinical areas. The document advocates expanding the use of national clinical databases to support decision-making and predictive modeling.

1. Linking disease registry information and
predictive modelling
Nick Black
Professor of Health Services Research
London School of Hygiene & Tropical Medicine
and
Chair, National Advisory Group for Clinical Audit & Enquiries
11 September 2012

2. Audit system
Research database National survey
National clinical audits
Network
Data repository
National clinical
Clinical registries
databases
Clinical databases
Surveillance system
Audit database Clinical
administration
system

3. Characteristics of National Clinical Databases
• Focused on health care/services
• National coverage (achieved or intended)
• Prospective
• On-going
• Recruit all patients or representative sample
• Collect patient-level data

4. Three main types in England
• Routine administrative databases
– include limited amount of clinical data
• Clinical registries
– few national ones (eg cancer registries)
– usually focused on rare conditions/interventions so data output at
national level only
• National clinical audits
– common conditions/interventions
– measure process (guideline) adherence and/or outcomes
– allow comparison of health care providers (institution or practitioner)
– about 60 exist

5. National clinical audits in England (2012)
Clinical area Number
Children (inc neonatal) 8
Adult acute & emergency care 10
Long term conditions 7
Surgery/interventional procedures 7
Renal disease 3
Cancer 4
Trauma 3
Psychological conditions/treatments 2
Blood transfusion 2

6. Expand the portfolio
“The Department will
extend national clinical audit
to support clinicians across a
much wider range of
treatments and
conditions…”

7. DH National Clinical Audit & Patient Outcome Programme
• Before 2008
– mostly cardiovascular conditions/interventions; cancer
• 2009-11
– childhood epilepsy; chronic pain; childhood diabetes;
adult diabetes; inflammatory bowel disease; heavy
menstrual bleeding; schizophrenia.
• 2012-14
– COPD; emergency laparotomy; prostate cancer; services
for those with learning difficulties; specialist rehabilitation;
arthritis; chronic kidney disease; breast cancer; sexually
transmitted infections; ophthalmic diseases.

8. Decision-making and predictive
modelling
• National clinical databases mostly been used
in England for
– Assessing the quality of providers (audit)
– Evaluating interventions (research)
– Informing national policies
– Evaluating national policies
• Little or no attention to their use in decision
making and predictive modelling