PCORnet Data Committee Overview and Establishment Notes - PCORnet/DataCommittee GitHub Wiki

Outlined by Russ Waitman, Data Committee Chair

Entering phase 2 of funding, PCORnet has established a Governance Structure that includes 3 main committees: Data, Research, and Engagement for the network.

"The Data Committee oversees PCORnet’s data network, advancing informatics and research data innovations that support PCORnet’s goals."

PCORnet's website contains further details on Governance Policies and the descriptions provided to the committee chairs were provided by PCORI on November 14, 2015:

• Description of the PCORnet Committees
• Overview of Committee Chair Roles and Responsibilities
• Overview of PCORnet Committee Composition
• Descriptions of the PCORnet Committee Chair Positions

Initial tasks

In reviewing our guidance, my assessment, the RAND PCORnet evaluation report, and further instruction of PCORI:

• Complete Committee by selecting two patient committee members as we didn't receive any on initial nomination process (#4). Current membership:

  • Russ Waitman (chair, GPC CDRN)
  • Bowen Chung (Community PPRN, new member perspective)
  • Keith Marsolo (ICN PPRN, PEDSnet crossover, prior co-chair, CDM-OMOP-i2b2 intersection)
  • Abel Kho (CAPriCORN CDRN, prior co-chair)
  • Michael Kahn (PORTAL and PEDSnet CDRN, OMOP-OMOP)
  • Michael Matheny (VA, pSCANNER, MidSouth crossover)
  • Daniella Meeker (pSCANNER CDRN and requested by PPRNs, CDM-OMOP)
  • Rachel Hess (PaTH CDRN)
  • Shawn Murphy (SCILHS, core i2b2 team -> CDM integration)
  • Leslie Curtis (CC) and seeking other non-voting liaisons (eg. Jamie Skipper at the Office of the National Coordinator: ONC)

• Develop a Living Committee Charter and Data Infrastructure Oversight Process in coordination with the other Committees and Coordinating Center that:

  • Establishes a meeting schedule
    • In person semi annual. Would be good to get a date soon and location
    • Webinars every two weeks initially, moving to monthly
  • Develops an email distribution list and internet forums to increase transparency and promote PCORnet innovations
  • Creates workgroups when necessary
  • Works with other committees to identify cross cutting topics and delineate responsibilities
  • Defines Specific Aims, Objectives, Milestones and Metrics
  • Establish key data liaisons with relevant PCORnet stakeholders (eg. ONC, FDA, Payors)

• Assess current data strategy implementation approach

  • Timeline for Development and Deployment of the Distributed Research Network (DRN)
    • What data (CDM 1,2,3, other) and functionality (data quality checks, query, DRN analysis) are available where by when?
  • Timeliness, affordability, scalability of DRN at operation
  • Understand development and project management approaches and decision making
  • Metric/Goal: initial assessments critical to PCORI: Jan-Feb 2016.

• Establish Data Governance and Institutional Agreements to enable the Use Cases needed for PCORnet to achieve objectives, maximize sustainability and advance comparative effectiveness research

  • reference Data Sharing Agreement Outline from Russ and the GPC team
  • Metric/Goal: agreement supports the obesity studies by June 2016.
  • DRN operation, specifically:
    • "Develop and oversee processes for requesting access to the DRN query tool in collaboration with the CC" (PCORI guidance to the committee)
    • "Monitor the use of the PopMedNet Query Tool in collaboration with the CC" (PCORI guidance to the committee)
  • PPRN <-> CDRN exchange
  • Data

• Monitor Data Quality of the DRN (will require regular reporting from the CC) (PCORI guidance to the committee)

• Foster the Data Community via PCORnet

  • Determine placement and participation of PCORnet data infrastructure in larger context and communities of evolving health data ecosystem.
    • Eye towards maximizing reuse of other infrastructure/analytics, ability to catalyze to other data intensive research (enhancing sustainability), engage data scientists in applying their methods to advance our nations' health
  • NIH/NCATS/CTSA
  • ONC PCORnet trustfund activities and SI Framework
  • Surveillance: OMOP IMEDS Sentinel
    • For example why not promote PCORnet but partnering with ODHSI (#7)

• Develop processes and methodologies for continued PCORnet innovation regarding applicable data model and software/methods development

  • Identify high priority data domains for inclusion in the data network (PCORI guidance to the committee)
  • Develop and propose annual updates of the Common Data Model (PCORI guidance to the committee)
  • Develop and propose optional modules to the Common Data Model (PCORI guidance to the committee)

• Information Security

• Interventional Informatics, Data Collection and EMR Integration

The GPC wiki DataCommittee topic has some earlier thoughts.

Data Governance thoughts

• GPC ticket #26 - de-identification of dates in GPC shared datasets: date shifting? by how much?

Code Contribution etc. moved to Community