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Transcript of © Mukoviszidose e.V. Patient registries: The role of patient organisations Dr. Andreas Reimann...
© M
ukovis
zid
ose
e.V
.
Patient registries:The role of patient
organisationsDr. Andreas Reimann
Mukoviszidose e.V. –
German CF-association
© Mukoviszidose e.V.
Patient registries: Why?
• Epidemiological information
– Prevalence
– Incidence
• Demographic information
• Genetics (if applicable)
• Information about way of diagnosis
• Localisation of care
• Health status of patients
• Treatment schemes
• Outcomes
• Epidemiological information
– Prevalence
– Incidence
• Demographic information
• Genetics (if applicable)
• Information about way of diagnosis
• Localisation of care
• Health status of patients
• Treatment schemes
• Outcomes
• Science
• Understanding „natural courses of disease“
• Estimating no. of undiagnosed patients
• Organizing care better
• Improving care
• Identifying „unmet needs“
• Science
• Understanding „natural courses of disease“
• Estimating no. of undiagnosed patients
• Organizing care better
• Improving care
• Identifying „unmet needs“
© M
ukovis
zid
ose
e.V
.
Generic types of registries
© Mukoviszidose e.V.
ComprehensiveInformation
Epidemiological information only
Update per patientonce per year
Event-drivenupdate per patient
Completeness
© Mukoviszidose e.V.
Nationwide
Regional
Almost all(diagnosed)patients
Sub-group of patients
Scope of registries
© Mukoviszidose e.V.
Ways of organizing registries
Organizer: Public bodies
Scientific networks
Patient organizat-ions
Single academics or institutions
Finance +++ ++ + +
Access +++ (+) ++ -
Organisation ++ ++ ? +
Comprehensiveness ? ++ ++ ++
Completeness +++ ? ? ?
Code of conduct +++ +++ ? ?
© Mukoviszidose e.V.
Code of conduct
• Confidentiality
• Quality of data
• Clarification of data queries
• External evaluation
• Reporting– Entire data-set
– Centre specific data
• Publication policy
• Access to (pseudo/anonymized) data
© Mukoviszidose e.V.
Role of patient-organizations
• Motivating and informing patients
• Input to scope of registry
• Organizational support
• Providing data for scientific and health-care system related purposes
• Financial support
• Evaluating registry reports/drawing conclusions on health-care policies
© Mukoviszidose e.V.
Concerns of patients
• „Don‘t know what this is good for“
• Confidentiality
• Feeling „outside the loop“
• Lacking or hampered access to (aggregated) data
• Poor quality of data
© Mukoviszidose e.V.
EXAMPLE:GERMAN CF REGISTRY
© M
ukovis
zid
ose
e.V
.
Quality-Management CF-Germany
© Mukoviszidose e.V.
German CF-patient registry
• Organized on behalf of Mukoviszidose e.V. by the centre for quality and management of the Lower-Saxony Chamber of Pyhsicians in Hannover
• Financed by Mukoviszidose e.V., partially co-financed by Christiane Herzog Foundation
• 95 CF-care centres
• 7.460 Patients (including 684 dead patients)
• 7.151 Patients have agreed to transfer pseudonomyised data
• New software: muko.dok
• Annual report
• Commissioned reports
© Mukoviszidose e.V.
Organization of German CF-registry
© Mukoviszidose e.V.
Beispiel:Altersentwicklung seit 1995
© M
ukovis
zid
ose
e.V
.
Benchmarking (= „Lernen von den/dem Besten“)
Projekt BenchmarkingProjekt Benchmarking
Benchmarking: „Dynamisierung“ des Qualitätsentwicklung (Konsentierung(gemeinsam) PDCA („Wirksamkeit)