Table 1

Lessons Learned From the ePCRN (Electronic Primary Care Research Network) Project

ProblemPotential Solution
Extracting coded data from an EHR loses information and may introduce inaccuracies, as different EHR systems do not record some clinical data items consistently, eg, blood pressure. Inaccuracies usually arise where the main terminology adopted within the EHR is a disease-based classification, such as ICD, that only partially meets the system’s requirement for clinical terminologyPromote the uptake of standard clinical concept representations, such as archetypes based on the CEN/ISO 13606 standard or HL7 detailed clinical models. Rather than a simple term, a more detailed description of the clinical context and value of the clinical data are maintained
Data extraction standards based on a snapshot transfer of EHR data on a given date (such as CCD/CCR) can be unwieldy when data needs to be extracted on a repeated basis, and bulk export facilities are rarely provided by EHR vendorsPromote mandatory adoption of HL7 information exchange standards as an international standard for the exchange of data between and with EHR systems. Include the necessary terminology services to map between different vocabulary systems where necessary
Clinicians and health care providers are rarely incentivized to maintain good data quality on the basis of research use aloneProvide good clinical reasons for data quality and detailed record keeping, such as audit or decision support
Legal and ethical constraints in many countries limit linkage of data and its use for research without consentPromote international consensus as to how and when data can be linked without consent, and develop systems for managing consent to extraction or study participation across systems. Include adoption of privacy-enhancing technologies, such as filters and third-party linkage systems
Researchers largely unaware of potential benefits offered by electronic systems to support research, and do not therefore create demand for wider deploymentConduct well-publicized pilot deployments and evaluations
  • CCD = continuity of care document ; CCR = Continuity of Care Record; CEN = European Committee for Standardization; EHR = electronic health record; HL7 = Health Level Seven International; ICD = International Classification of Diseases; ISO = International Organization for Standardization.