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Challenges and Opportunities forData Reuse
Ronald Cornet, PhD
Dept. of Medical Informatics
Academic Medical Center – University of Amsterdam
Overview
Why Data ReuseCategories of Data ReuseChallengesOpportunities
Data Reuse
Many data are collected in the care processMany data are needed e.g., for research
purposesTwo options:
Dedicated collection of purpose-specific data Re-using data from the care process
Dedicated Data Collection
Allows for optimally defined data setBut…May lead to redundant data collectionCan not always be performed (e.g.,
retrospectively)
Re-using Data from Care Process
Benefits from readily available dataBut…Data may be incompleteData may lack detailData may be biasedData may be incomparable
Seeking a balance
Data from the clinical care process often not fit for reuse
Dedicated data collection costly or impossible Recording “everything” about “everyone” is
impossible How to collect data in the primary care process
that can be reused with minimal drawbacks (e.g., bias, detail)?
Example – cost analysis
Cost analysis based on care recordsOnly recorded care is taken into account
for cost analysisE.g., during a busy night, a severely
traumatized patient enters emergency department, receives blood, resuscitation, and dies, is transported to morgue; no record created
Secondary Uses and Re-uses of Data
Protect and enhance public healthDevelop security and confidentiality
algorithms and test de-identification routines
Conduct researchCreate and maintain terminology and
representation formalisms
Secondary Uses and Re-uses (II)
Develop and apply decision support for health care providers
Support quality of patient careImprove patient safetyManage personal health
Secondary Uses and Re-uses (III)
Educate and credential healthcare providers and assess training activities
Analyze and Manage FinancesDetect fraud and illicit activityIdentify markets and promote sales
Examples
Public health
E.g., setting up disease-specific registries Cardiosurgery Renal Failure Intensive Care
Research
E.g., development of prognostic models
Examples
Decision support
E.g., develop algorithms, rules, and alertsQuality of patient care
Manage quality and outcomes» More on this tomorrow (Dr. De Keizer)
Manage staffing and resources Develop and assess quality indicators
Factors influencing Authorization for secondary Use (I)
Identification Status: Patient identifiable, de-identified, anonymized
Consent provided at the time of data collection Demographic representation, e.g., age, race,
gender Focus on a vulnerable population (e.g., prisoners) Original collector and aggregator of the data
(government, private)
Factors influencing Authorization for secondary Use (II)
Proposed secondary user of the data, e.g., government, academic institution
Funding source for secondary use Financial compensation to data collector for
providing data to a second party Beneficiary of secondary use, e.g., society,
researcher, academic institution Disclosure of secondary use, e.g., public
disclosure of results and/or methods
ERA-EDTA RegistryData about patients on End-Stage Renal
FailurePatient data recorded in renal centersData from centers to national registriesData from national registries to ERA-EDTAERA-EDTA shares outcomes with USRDS,
ANZDATA
Data Reuse Case StudyData Re-Re-Reuse Case Study
Challenges
Opportunities
Adjust data to the intended reuse
orAdjust the intended reuse to the data
Conclusion
Round-up
There are many kinds of data reuse
