patient recruitment johan van der lei dept. of medical informatics erasmus medical center r’dam
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Patient Recruitment
Johan van der LeiDept. of Medical Informatics
Erasmus Medical Center R’dam
My motivation
• Each visit is a learning experience• But we fail to learn collectively• Each prescription is an experiment• But we do not know the outcome
• Day-to-day routine care: missed opportunity
seventies
eighties
History
Categories
Visits
Problems Prevention
Add. Patient data
Family data
Lab dataPrescriptions- contraindications- current
Referrals
Background
profession:codicil:will:other:
eighties
100100
Per
cent
age
of p
rimar
y ca
re p
ract
ices
Per
cent
age
of p
rimar
y ca
re p
ract
ices
00
1010
2020
3030
4040
5050
6060
7070
8080
9090
7878 8080 8282 8484 8686 8888 9090 9292 9494 9696
YearYear
number of installed systemsnumber of installed systems
number of systems with CPRnumber of systems with CPR
Growth of CPR systems in primary careGrowth of CPR systems in primary care
From paper To EPR ...
Nineties: transition finished.
Observational DB
IPCI database
GP
Anonymize patientAnonymizes GP
Erasmus Gatekeeper
Data qualitycheck
patient researcherMid-nineties:
So …
• The GP’s patient data are ‘unlocked’• Next: the patient him/herself?
• Asking individuals – Detailed outcome (e.g., QOL studies)– Rare diseases (genotyping)– Controls
• Randomising individuals
Asking info
• Additional info– Response 70-80 % for questionnaires– 60 – 70 % case finding, diseases– 30 % case finding, controls
Randomizing individuals– Randomized database studies
• ‘on the fly’ inclusion• randomization by software
– Attempt terminated– Two main reasons
• Vioxx• Excessive load on daily practice
– Bottleneck• informed consent• timing
Conclusion
• Additional info– Good response for additional info– Controls are more difficult
• Randomizing individual– Difficult– Time-consuming (GP)– Patient: cooperative
Issues
• Emphasis on work-flow– “preview” mechanisms?– Financial reward?– Work delegation?
• In case of genuine equivalent choices……• Do we need informed consent?
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