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A model for improving patient engagement and data integration with PCORnet patient-powered research networks and payer stakeholders
Investigator (PI): Haynes, Kevin
Performing Organization (PO): (Current): HealthCore / (302) 230-2000
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2016
Final Year: 2020
Record Source/Award ID: PCORI/ME-1503-28785
Funding: Total Award Amount: $1,035,023
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Patient-centered outcomes research (PCOR) requires access to patients. The potential role that payer stakeholders, that is, commercial insurance companies, can have is poorly understood. Through the use of longitudinal patient-level administrative claims data, large insurers, such as Anthem, can identify from their general membership patients who may be appropriate for engagement in PCOR opportunities. This proposal seeks to confirm the ability to identify patients with diseases of interest using diagnostic codes submitted to large insurers as part of the payment reimbursement for care. This application also proposes to test new interventions to engage patients in the PCORI-developed national research infrastructure, the Patient-Centered Clinical Research Network (PCORnet). The network created patient-powered research networks (PPRNs), which engage collections of patients and/or caregivers who are motivated to actively participate in PCOR opportunities and to contribute to research comparing the effectiveness of various treatment strategies. Specifically the project will work with the following PPRNs: American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network, ARthritis Patient Partnership with Comparative Effectiveness Researchers, DuchenneConnect Patient-Report Registry, Health eHeart Alliance, Multiple Sclerosis Patient-Powered Research Network, NephCure Kidney Network, and Vasculitis Patient-Powered Research Network. The significance of this proposal is to expand the population of patients who may be appropriate for PPRN participation. This will be achieved by involving a large commercial insurance provider to increase the diversity of patients who may be engaged in future PCOR opportunities. A notable outcome of the proposed research will be to improve the methodologies used to perform data integration between a large commercial payer and participating PPRNs. Data integration that maintains patient privacy is vital to the conduct of patient-oriented research. This integration is needed to confirm the diagnoses found in administrative claims data with that of populations with known diseases of interest. The integration of longitudinal Anthem payer claims data into the PCORnet environment will further the mission of improving access to integrated data for various stakeholders, who can then utilize it for improving the quality of clinical care provided to all patients. Our project will advance the next iteration of the PCORI Methodology Standards; and assist future PCOR researchers in data linkage, computable phenotype validation in administrative claims data, and patient engagement from insurance providers.
MeSH Terms:
  • Biomedical Research /organization & administration
  • Chronic Disease /therapy
  • Comparative Effectiveness Research
  • Data Collection
  • Databases, Factual
  • Humans
  • * Insurance, Health
  • * Outcome Assessment (Health Care)
  • * Patient Participation
  • Patient-Centered Care /*methods
  • Phenotype
  • Privacy
  • Quality of Health Care
  • United States
Country: United States
State: Delaware
Zip Code: 19801
UI: 20162167
Project Status: Ongoing
Record History: ('2019: Project extended to 2020. 2017: Project extended to 2019.',)