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Building patient-centered outcomes research (PCOR) value and integrity with data quality and transparency standards
Investigator (PI): Kahn, Michael
Performing Organization (PO): (Current): University of Colorado Denver, Anschutz Medical Campus, School of Medicine, Department of Pediatrics, Section of Epidemiology / (720) 777-6412
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2013
Final Year: 2017
Record Source/Award ID: PCORI/ME-1303-5581
Funding: Total Award Amount: $1,100,530
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: A growing array of patient information in electronic format is expanding the view of patient-centered outcomes research. Electronic health records, personal health records, Internet blog postings, social media sites, and wearable electronic sensors are examples of new data sources that provide a more intimate and complete view of an individual's personal experiences with their health and the health care system. However, these data sources have not been created to support clinical research. Legitimate concerns about data quality (DQ) and its impact on study validity need to be addressed. Yet there are no guidelines for how data quality should be measured or reported. This project will develop recommendations for reporting data quality results in a standard format that can be easily understood by both clinical investigators and non-technical consumers such as patients and policy makers. We will develop an initial set of recommendations for measuring and reporting data quality results by combining existing publications, guidelines, and practices. We will use the Internet and two face-to-face meetings to reach as many investigators, patients, and policy makers as possible for input into our recommendations. To test if our recommendations can be implemented, we will create data quality measures from a number of existing databases and store these data in a common format, called the data quality common data model (DQ CDM). Using this common format, we will develop prototype data quality reports and graphical figures that present complex data quality results in an intuitive manner. Using a common data format will enable the tools, reports, and visualizations created in this project to be used by any other project that adopts the DQ CDM format for data quality measures. To validate our work, we will once again reach out to investigators, patients, and policy makers using the Internet and two face-to-face meetings. We will adjust our recommendations based on our experiences developing data quality measures and reports and on the input we receive from our outreach efforts. We will also investigate non-technical barriers to creating and reporting data quality results. Possible non-technical barriers include concerns about violating patient confidentiality, intellectual property with proprietary data, or workflow burdens. The underlying motivation for this work is our belief that improved transparency in describing the quality of the data used to determine a research result is an important component in building trust in findings derived from these new sources of patient data. More on this project: Mackay EA. Patients, consumers, and caregivers: the original data stewards. EGEMS (Wash DC). 2015 Mar 23;3(1):1173. doi: 10.13063/2327-9214.1173. eCollection 2015. PubMed PMID: 25992390; PubMed Central PMCID: PMC4435025. Michael G. Kahn, Jeffrey S. Brown et al. Transparent Reporting of Data Quality in Distributed Data Networks. EGEMS (Wash DC). 2015 Mar 23;3(1):1052. doi: 10.13063/2327-9214.1052. PubMed Central PMCID: PMC4434997.
MeSH Terms:
  • Access to Information
  • * Data Collection
  • Electronic Health Records
  • Health Policy
  • Health Records, Personal
  • Health Services Research
  • Humans
  • Internet
  • Medical Informatics /standards
  • * Outcome Assessment, Health Care
  • Patient-Centered Care
  • Program Development
  • Social Media
Country: United States
State: Colorado
Zip Code: 80045
UI: 20143573
Project Status: Completed
Record History: ('2017: Project extended to 2017.',)