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?