Poor data quality in electronic health records (EHRs) can threaten the validity of study results thereby affecting personal and policy decision-making by different consumers of the information.  We engaged stakeholders representing patient-advocates and policy-makers to guide the creation of data quality assessment (DQA) reporting standards that includes these data consumers’ perspectives.

Objectives/Purpose                                                                                                                                                

Inform proposed DQA reporting standards through data consumer stakeholder feedback.   

Methods

Qualitative methods were used to moderate a stakeholder engagement meeting as part of a patient-centered project on data quality and transparency. The discussion guide used broad, open-ended questions and prompts to elicit stakeholders’ perceptions of their members’ concerns about, interest in, and opportunities for engagement in DQA reporting.  Stakeholders included representatives from nonprofit public policy or professional organizations, federal government agencies, and patient advocacy groups.  Data were analyzed using qualitative content methods and reflexive team analysis.

Results

The stakeholders (n=21) expressed a strong interest in DQA and reporting.  They desired significant engagement at initial data collection and analysis stages as well as at later-stage categorizing, analyzing, and reporting of DQA findings.   Patient-advocacy stakeholders believed that engagement at data point-of-capture is critical to improved data accuracy and clinical decision-making.  Policy-makers identified medical providers’ distrust of data accuracy in EHRs as a significant barrier to secondary use of data sets (for comparative effectiveness research, benchmarking, or Meaningful Use).   Potential solutions identified included changing data capture systems to include individual-level review.  All stakeholders believed facilitation of review of DQAs, and dissemination and implementation of DQA results, are unique roles they can have in DQA and reporting. 

Discussion/Conclusions

The stakeholders’ feedback suggests the addition of individual-level review of data and value of broadening the participating communities in developing DQA reporting standards.  Making DQA results accessible to data consumers may increase confidence in data reuse for research, health, and policy purposes.